Here some suggested organisations that offer expert advice on SN.
God what do I do with my poor DS?(475 Posts)
He couldn't get to school at all today. He has only been going in for part of the day with me. He was wailing and crying about putting his uniform on and how he can't cope.
Where do we go from here? His third school. One period of HE already. School will do whatever they can but he can't cope and I worry I am damaging his mental health.
He finds it so hard to explain how he feels but he can';t cope with kids at school. We went to a special school to look around yesterday and he wouldn't look in the classes and got visibly stressed out at a glimpse of a child in a far off corridor.
What do you do?? CAMHS? HE? This can't go on.
my ds was exactly like that
he refused totally in the end
we did home tutoring (provided by LA and it was a nightmare) and then ind SS, which is where he is now.
If I could have my time again I'd have pulled him out of school before he got to crisis point and would have HE or asked for indi SS earlier.
sorry that you ds is in such a bad way BTW
you must be at your wits end with it all as well
I'd HE. It's NOT the end of the world to say group learning/institutional learning doesn't suit you. It's not an indication that you are rubbish. It's just a fact. Let him learn in the environment he needs and succeed. Give him a happy childhood to take forward into his adult life.
HOme Educating is NOT the booby prize. For some little people its like finding the sunshine again after a long cold and exhausting winter.
also...sorry to keep adding bits on...my ds needed time away from education to deschool before he could contemplate indi ss.
Maybe that's what your ds needs?
God. We have just applied for a mortgage to move house as well as we've been in rented while trying to decide what to do.
But I can't cope with any more chaos and I'm now thinking we should pull out as everything is all over the place and I don't know I can cope with a move.
I know what you mean about HE but I also think he may manage an indy special. I just don't know.
if only we had a crystal ball life would be so much easier!
Run away to this for 18months and come back better.
I am going to be more direct than I would usually be. I'd take him out of school, HE for as long as he needs. We only get one childhood. He clearly cannot cope with school at all, has moved several times so another move is very unlikely to solve this. He needs time out to 'get well'. I think you have to do what is right for the here and now, and clearly school isn't right for him at the moment. It doesn't mean it won't be right at some point in the future, and he may need a very slow transition back into formal schooling, but it is now that matters.
Is he more upset today because he went to see another school yesterday?
Thanks. Do you think we are mad to try and move somewhere in the same town?
I'm not sure we don't all need a fresh start. I would love to run away west and just be a family for a bit. HE both of them. That is really what I would like to do.
DS2 likes school and DS1 has a few friends. Would it be made to take him away from it?
I'm not sure I can cope with packing and mortgages just to be here in the same place we've been folundering in for 10 years - 10 years!
Things to think about:
1. Is he getting any benefit from going
2. Can school provide him with a room so he is taught away from the other children?
3. Would you want him to be?
If the answer is No, I would be inclined to remove him. You may need to get him signed off by CAHMS to get a home tutor.
After a period away from school, as Corny has said, your ds may be ready to look at an indy school.
I made my dd go to school until she had a breakdown, and swore the same thing wouldn't happen to ds (who's 10).
Have you been to CAMHS before, do you have a contact there you could use for advice?
How old are they all?
What about work?
What are the options?
I would at least try and get some medical support via GP and CAMHS etc as if you deregister and just home ed you will lose your statement and all the hard won provision in it.
You need to request an emergency review and tell the LA you think he needs a period of no school/ home tutor, then gradual return to an indi SS. I think you just have to bite the bullet and have the conversation with the LA.
You have school support at the moment and its going to be easier to get indi ss with a school backing you up than without.
Grrr Cross post
Or run away - thats also an appealing option
1. No benefit as far as I can see and I have to go with him
2. No. We are moved around from staff room to corridor to teacher's office
3. I don't want him stuck in a little room on his own with a TA, wincing when he sees a child.
Maybe it is time to do what you want to do and be where you want to be. You do sound as if you want to move away and HE? What is stopping you?
You need to get him out of there, but Agnes is right.
Do not deregister to HE, get him signed off sick, - in my LA it needs to be done by a consultant. They will want to send a home tutor round, which you may or may not want.
Give him some space and yourself some thinking time.
I have asked for help from the LA who reviewed statement and issued a no change at AR and said they'd look at it again in July!
He is out of bloody school but they say the provision is 'appropriate'. The statement can't even be implemented at the moment so how can that be.
Solicitors are now dealing with it by way of JR
I have now made an apptmnt for GP but local CAMHS are crap and are likely to mess with his head even more!
He is just tired and he's had enough and so am I!
Polter - what is stopping me? DS2 I suppose. He likes his school and it is a nice school. Also knowing that running away is not always the answer and may be a 'fight or flight' response!
Icedcake- not sure what the position is here. Our GP is very nice and I am trying to see her next week. I am sure she will help as she knows the history of all this.
I'm not sure DS could cope with a tutor just turning up!
Flowwithit - I think he knows his current school is not right for him and that he only stands a chance at in a more specialist environment. Even then, it would be tricky. I think he is just tired of trying. He said it is like constantly forcing someone's hand open and putting a spider in their hand when they are scared of spiders.
They are 10 and 7 now.
We have moved twice and both times did our homework and have been in better position then if we hadn't moved. It's been nothing but positive for us. I admire you for fighting but one of my very wise boss told me once, Never ever give up, but know when to quit.
What dev said
Sometimes we do need to stop fighting. There can come a point when we are so embroiled in the fight we forget what is actually important. Your priority is your ds1's wellbeing, and your wellbeing too, you sound exhausted.
When was the last time he was happy? What were you all doing?
I can't know what's right for you but for us HE has been great. Yes there are days that are hard but ds is happy. We can go out. He is making progress. As Dh said "you can't do worse than school" and this is true. For MY ds school is too hard. He just can't.
The difference for the rest of us is immeasurable. I wake up happy.
Thanks. I am exhausted. I look at back at old photos we have around from the days before school and we are all so happy. I look like a clapped out old bag now!
We have spent thousands fighting for stuff that is useless if he can't cope with school.
The solicitors are going to explore what is right for him through the JR as they say there has been a failure to educate and they will get a new EP report. That might help with considering options.
Now we have pulled out of the house purchase and I am starting to feel better a bit. A bit more in control. We can move if we want to.,
I want my life back!!!!!!
'I want my life back'
That is exactly what I said when ds was in that situation
but you can't go back you can only go forward
his current school can't meet his needs and he needs time away from school to recover
Realistically would the LA be able to have a tutor in place before the Summer if you got him signed off now?
That would give you until Sept.
He may be able to cope with a tutor then for a couple of hours a week maybe?
Being horrid about this, HE has the major disadvantage that it saves the LA shed-loads of cash. Which means no chance of indie SS. Staying on a school roll, but not attending, means they still fund his place. So I'd suggest looking to HE in practice, but not on paper.
Thanks. I will see what the GP says but part of me thinks school refusing with Aspergers is a normal psychological response and not a clinical disorder! I suppose it is proving that it will harm him to continue at school at present.
Could the EP not have said this to save us the bother? Poor DS - he's been poked and prodded and assessed constantly since he was 5.
I found this, If you ignore the guff about separation anxiety, there is some sensible stuff there to look at. www.myaspergerschild.com/2010/03/aspergers-children-school-refusal.html
I would suggest a period of "de schooling" which is a HE term for helping dc come to terms with bad experiences at school.
Perhaps then after a time (they say a minth owr year at school generally) you could check out your options wrt the right place to for your dc.
I am sorry.
It's soul destroying to see your child so unhappy.
I'm home eding my DS. I removed him from school last July whilst I fight tooth and nail to get him SA and proper provision. HE has been a life saver not just for him, but also for our entire family. Long term it is not the right provision as he needs so much help and specialist education that will only come with an independent specialist school. But whilst I carry on fighting the LA, HE has absolutely given us all the mental breather we all needed.
This time last year I was fighting the LA, the system, my DS's emotional problems, the teachers and the school itself. Now I'm "only" fighting the LA and the system. Emotionally my DS is a different person.
Some HE days are harder than others. The long winter months being the worst as he loves being outdoors. But the last few months has given us all a massive breather. I've also got to know my DS properly again. I know what makes him tick and what doesn't. We've had some great fun HEing. My DS wakes up happy in the morning and so do I (or I would if it wasn't for the total nightmare that is my LA!).
We still have a long long way to go (Tribunal in 2 months). But I have my little boy back - I missed him. My heart wants to keep HEing for ever but my head tells me he needs to be an a specialist school.
I'm not sure of the position re: HEing if you already have a Statement. I deregisterd my DS before they were forced to SA him. But in my home ed documents I send to the LA's home ed advisor every 6 months or so, I always state that he is only being HEed until his Statement has the correct provision. I want to make it quite clear to them that I will not be going away any time soon and HEing is only a short-term solution!
HE can be a really lovely experience. I really recommend this blog by a fellow HEer who is now "the other side" with grown up HEed children rossmountney.wordpress.com/journalblog/
Thanks. He is just so exhausted and we are too and this is at a really good school which will do ANYTHING to help.
I'm sorry, it hurts so much when it's our children.
It might be a good school, but is it the RIGHT school? My son's school was/is a very good school and would do anything to help, but ultimately they did far far more damage than good. My son was once again assessed last week by an independent EP and she went mad at the damage his school did to him by trying to do "anything" when they clearly couldn't cope and should have said so years ago. We are living with that damage even tho he left nearly a year ago.
I think there is a limit to what can be done in mainstream in some schools. The school will accommodate anything but ultimately this leaves him outside the class, supported by me, scared of other children. This is no good for anyone.
Has anyone else had there child scared of the other kids?
My son was badly bullied and has asd traits so it was doubly hard.
He was very timid from being a baby/toddler and - I am not proud to admit this - I was embarrassed sometimes. He was alway the child hiding behind me or crying or refusing to play.
And I got nasty PA comments from family members too.
You are right in that you being - effectively - his TA is not good for either of you.
It sound like he needs a total break.
Have cahms mentioned CBT?
He says he doesn't trust them, he is different from them (he explained to his SLT that he was like a different kind of animal) and the children stare at him!
He isn't like this with adults although he generally won't speak to people he doesn't know.
I think well-meaning mainstream schools can do more damage than good. With all the best will in the world, they are not specialists for all types of SENs. In my son's case they should have told me years ago that they were out of their depths. But instead they carried on muddling through. As it was private school, as long as I threw them money, they kept going and telling me he was doing fine with no serious problems.They should have been morally honest years ago.
Haven't been referred to CAMHS. Consultant Paed said to see EP - put that in a letter. So I did. EP said try no classroom and very limited time in school. Now that isn't working. I've gone back to EP. No response as yet. Have also tried GP. No apprmnt for 2 weeks but have emailed surgery
But local CAMHS are hugely CRAP and the thought of them messing with his head terrifies me. I'm trying to see if I can locate a specialist psychohistory with knowledge of AS.
I think the school know now its not working and that they have done all they could. I don't think there are easy answers. It's exhausting
inappropratelyemployed, is short-term HE a realistic option for you? It sounds as though you all need a break from school?
My son is very unlike his peers.
He doesn't do Star Wars, Ben 10, moshi monsters etc
I think he felt very lonely for a long time
HE is an option as I have basically been doing HE but in school!! I will have a think over the weekend and speak to my GP.
Yes my ds is scared of other children. He is better with adults than his peers. It's like he doesn't understand other children of his age. He is very wary and looks physically scared of other children sounds similar to your ds
Even if it's only short term until the end of the academic year, it might give you all a breather. I'm not sure on the legal position if you already have a Statement, but if you cover your back as much as you can on that score?
A year ago the thought of HE filled me with dread and fear and the irrational thought that I'd failed. A year on, it was absolutely 100% the right short-term decision.
Thanks flowwithit - glad to see he's not alone. Has anything helped your DS with it?
Rosie - you can dereg with a statement but you lose all the provision and of course the LA wash their hands of you which is unhelpful for Indy SS placements.
I have been asking the EP straight whether I should continue with this as I am worried about his mental health but they won't answer. I think he needs a break for medical reasons now.
I'd get him signed off sick and just relax till September. Then start super slowly. How is he academically?
He's doing really well. Nothing I can't teach and he is happy for me to teach him. DS2 gets very upset though.
Yes. That would be good. We use lots of different resources and he likes working online.
My ds developed this as he got older and more aware I think. He just doesn't like children he doesn't know for some reason.
What are online schools like?
Flow this is exactly what my reasoning is. He has realised the difference between him and his peers and finds it too hard.
Yes I think you are right about that. It's very difficult to solve though. We have tried very hard to build our ds confidence but his default seems to be anxious worry or confusion. We have also thought hard about what support would help with that at school and I think that it's either something he will get used to or not. My ds seems uncomfortable being himself especially out of our house and he hates feeling different.
Also he doesn't want to meet other children with ASD because he says 'they are so strange' even though he has never met anyone else with ASD.
DS goes to an NAS group and says he is more comfortable with children with ASD.
Thats a good sign for s school then perhaps your ds would feel more comfortable there after a time. I think if I could get my ds to go to an asd group he might actually find that to but at the moment he is wary of all children his age or older.
My ds is nearly 13 so bit of an awkward age anyway I suppose.
This is one of the reasons he doesn't want to move. But I hate this place now! I know it is irrational.
You are probably just feeling exhausted at the moment. It sounds like you need a bit of a breather to get your energy back again then you will be able to make a clearer decision.
Thanks flow. I think you're right.
What about a year of
And a planned adventure? Something like walking in the Himalayas or crofting in the Hebrides or canoeing through Algonquin. Something life changing and positive.
The Briteschool looks interestesting. Have you used it?
As for the other suggestions, well wow, I would love to do something wild and different if I had the dosh!!
Well 12 months find raising then followed by a fantasia!
Do you want to sponsor me to eat choccy biccies? It's a start and all I am fit for!!
I haven't used briteschool but it has a good rep and provides some structure. Ask on HE board they know everything. For us it will probably be a stepping stone back to school.
I will look into it. Living from day to day at the moment and its so stressful.
DS1 was scared of other DC too. The SALT and OT sensory assessments he had in the run up to tribunal show how problems combine to make both the physical and social worlds scary and unpredictable places that can lead to overload each occasion the child enters that environment so that the child never becomes desensitised/used to it/able to cope with more.
If I were you I would not just consider the short-term (however overwhelming the day to day is now) but what you want to happen for the rest of his education. Perhaps it would be best to divert your energies from trying to make the statement work in the m/s to selecting an indi ss and getting him in the right place now otherwise you/he will have the transition to secondary to contend with.
In the meantime the best thing to do for your and his mental health and well-being
and tactically is to get him out of school. Make sure the absence is authorised. Get him signed off by the GP for now but this will need to be backed up by a consultant. He will remain on the roll and be entitled to a home tutor. Make sure you get the right tutor as an inappropriate one is likely to be the first one available rather than the right one (who is likely to be in more demand). The LA will see this arrangement as temporary and will want to find somewhere for him. m/s has not worked. Do the LA have suitable maintained ss? Can provision be increased to make the m/s work and what would be the cost difference between this and indi ss?
Had our Tribunal progressed it would have been shown that the cost of the package to deliver only some of the support required in the m/s was actually more expensive than placement in OOC indi specialist school that could provide all the support. DS1 left primary school on SA+, no SALT, no OT, no 1:1 and around 3 hours support (interventions, small group, whole class combined).
You need to work out where you would want him to go. A lot of ss I have seen mix DC that externalise anxiety with those who internalise it. I would say that the most important thing to reduce anxiety is to find a similar peer group and to have a consistent, structured routine in a low stimulous environment which minimises sensory input.
Thanks keeping. It is such a nightmare to have to drag the poor chap through all these assessments constantly.
I agree with you on focussing on the long term. I spoke to my solicitor/barrister last week and they say there is a failure to educate and that this needs sorting now and in the long-term so have suggested getting an EP report under legal aid.
I also agree with you on the difficulty of finding the right placement. I have to say I have not yet seen anywhere that has a similar peer group of anxious Aspies. The Aspie specific schools seem to have a lot of children who externalise their anxieties as you suggest.
Do PM me if you have suggestions!
AS specific schools were not appropriate for DS1 who also has SpLD.
In reality the supposedly SpLD schools have LA funded pupils with complex needs (there is no way an LA would fund indi ss for 'just' dyslexia) - either AS + anxiety or dyslexia + anxiety or AS + SpLD + anxiety. The common feature is anxiety secondary to ASD/SpLD. The child has to complete an evaluation and an important criteria is whether the DC already there think they will fit in/are like them. Externalisers are weeded out as they would increase the anxiety levels of all the DC.
You need to ask yourself whether DS's main barrier to learning is AS or anxiety and whether it will ever be possible to reduce that anxiety atm in the m/s. Yes, there is clearly failure to educate but maybe any m/s school would fail. Maybe you need to look at schools for secondary anxiety (not EBD). You might find that the anxious Apsies are here.
wrt EP you should seriously consider using Ruth Birnbaum. She wrote a book about choosing an SEN school and we used her to carry out a 3 hour visit to the LA named school to assess its suitability. I know that assessments are a trial (DS1 had 10 in the last 10 months!). RB's school visits don't involve him. You can also arrange for her to visit your school of choice - ideally whilst he does an evaluation. I would imagine she would want to assess him first though.
I'm not really sure what you are trying to get your solicitor/barrister to achieve . I was just thinking that maybe your money and energies were best diverted.
The barrister is one of the country's leading specialists on children with disabilities and he has recommended judicial review on failing to educate.
This is not failing to arrange the provision in the statement.
The argument here is clearly that the LA know the statement is not fit for purpose but have done nothing as DS's schooling disintegrates and he ends up out of education. This includes failing to identify his needs and what the appropriate setting would be.
We are looking to get an EP report under this claim. He has recommended someone else - also very well known.
The problem with some SpLD places is that they don't have AS understanding. DS's has social communication difficulties beyond mere anxiety and it is not just structure which will help but expert support in teaching communication skills.
It is not just structure but the provision of onsite SALT and OT. Even if he did not have the ASD diagnosis, DS1 would 'qualify' (ie over 5 years behind) for a SLCN statement. In quantifiable terms, the SpLD are the least of his problems. SALT is not only given for at least 1 hour per week 1:1 but embedded in teaching, plus a SALT led social skills group. No matter how good the m/s school DS is unlikely to/will never get that.
In real life it is difficult to separate social communication difficulties and anxiety as they exacerbate each other. So target both.
I don't know the best way to proceed legally but I would want to get DS signed off, call an emergency review, argue breakdown of placement, stress desire to get DS into school rather than HE, need to find the right place, name it and if the LA don't agree then appeal. Having never got to this stage I don't even know if this is possible but I think it helps to know what you want to achieve and then work backwards. There are usually several possible routes. I assume that you have chosen what you believe is likely to be most successful. Its a bit like a kaleidoscope though - how does the picture look with DS out of school?
Thanks Keeping. I think the problem I have is that the main SpLD school locally has already said they could not meet his needs. I think he is beyond them really and I do wonder about the expertise of straightforward SpLD schools regarding ASD and their ability to meet ASD needs in practice, particularly after the SE saga.
Another SpLD school said he was too academically able.
So I am afraid I can't set my cap at some particular school and work backwards. I think a new EP report is a starting point. I don't want just get someone to report to justify a particular school placement. I am doubtful after discussing this at length with a variety of practitioners that there is such a thing as the right school for DS.
I thinks a flexible or more creative package of some sort might be the answer.
Hi IE, I would be interested in finding out more about "failing to educate". My LA has named a school for ds in spite of that school saying it can't meet his needs.
I've just done a quick google and not found anything of any value. Would you be able to suggest any link?
OK, I've just found this
I think i'll give either them or IPSEA a call next week.
Hope you're enjoying some sunshine today
I would recommend SOS-SEN. I have always found IPSEA a little 'lightweight' on trickier matters,
SOS-SEN were very strident on this when I spoke to them.
DS1 isn't completely scared of other kids, inappropriately but limits his exposure to them. His class is 75% boys, so, even in year 4, they get into a lot of rough and tumble during down time and he will join in with this, since he likes the stimulation and he knows the rules (to an extent). If group work is required, or organised play, or the second they are out of the school doors, he will blank them and even run away, even boys he gets on with. He is very much on the periphery and I'm making the point at this AR that his social needs are unable to be met in this situation.
Ouvrye - DS has a couple of kids he trusts but he knows he is different and I think this is deeply hurtful to him. I think he dreams of being like the kids he sees on the tv and he thought moving to secondary school would be like 'Diary of a Wimpy Kid' but I think he's realising it is not like that for him.
He doesn't say this. He doesn't say much but he seems sad. He wanted to stay in his room today and watch the 'Suite life of sack and Cody' on a loop. He got angry with us for interrupting him.
I wonder if he is depressed too
Oh dear it's so difficult I don't know what else to say really because that sounds similar to my ds. I think it hits hard the realisation moving to secondary and the emotional/social gap seems so much bigger all of a sudden. I notice how much more grown up the boys are from my ds primary school. It must be very hard our ds to cope with that. My ds loves diary of wimpy kid too movies and books read over and over. I wish I had answers and I know how you must be feeling its heartbreaking to see them struggle so much and not be able to fix it. I hope you make some progress soon
I'd say HE too.
You can have a statement maintained when you HE - some LAs will try to cease it but legally they have a duty towards children identified as having SENs so it has to be with your agreement. Insist it's kept up so that you can continue to get any supports possible that are laid out in it, plus you may also need it in the future.
When my son was deregistered at age 10 he was a mess, and like you I feared for his mental health if we kept him in the school system - it just didn't work for him and support was minimal, and in fact much of what was provided was damaging to him. He needed a very long time to recover from his experiences and he wasn't able to join even very small HE groups without close supervision for well over a year.
This is why I'd be cautious about staying on a school roll and holding out for LA home tuition. You can't guarantee that tutors allocated to you will have SEN awareness and your son could find that a challenge, and it might even damage him further. Plus, they'd want to provide tuition on their terms, not yours, and if your son's not ready for it because of long-term stress then the LA won't take kindly to it. Also I hear that a lot of home/hospital provision can be erratic and often not worth its while - in some cases it's just LAs ticking boxes to show they're 'providing tuition'.
Also, if you were to pursue a placement at special school at this time, before your son's had a chance to recover, the likelihood of failure is higher. Do you think he could cope with settling into a new school in the next six months? If you think not, then wait awhile till he's more stable.
In your position I'd HE outright so that you can be in control of your son's development, both academic and personal, though you'd still get an annual review of his statement. In practice this could just be a formality to keep it going, and I'd suggest you do that so that it's up to date for when you're ready to return your son to the school system.
I'll admit that I'm speaking from my own experience with a disinterested and unhelpful school and LA and I appreciate that things might be different where you are, but I think it makes sense to proceed with caution.
Whatever you do it seems clear that you can't continue like this as your son is being harmed by a system that isn't right for him, and you need to act to protect him. Best of luck to you all.
Thanks Streaky. I completely understand what you are saying and the last thing we would want is a succession of inappropriate teachers.
It may be some HE will be the answer in the short term but I am wondering long-term if we can't find a special school, whether a more flexible package is the answer for him. That is why I am interested to get a really good EP involved.
It needs some thought but in the immediate term, I can't send him back. I've just tried to entice him out with a trip to the zoo and he has said 'I don't think I'm well' but doesn't know what's wrong. Maybe he's coming down with something or maybe he feels miserable. It's so hard to tell!!
Since he already has a statement in place you might find your LA will allow you access to their EP service, but it's something you'd need to check out. LAs don't have a set budget for home education, though they can make provision if they choose - but in this climate of cutbacks that's not very likely. EP is meant to be a statutory service but LAs interpret the legality their own way and can refuse.
I've got the LA EP involved in ds's case - she did assessment for exam access arrangements a few months ago and as I've just applied for a statement she's used those discussions as a basis for her contribution to the SA. She is very helpful, but doesn't provide any practical developmental work for ds - her involvement is purely assessment and admin, and even then I had to involve my MP to get to her. But it varies between LAs so you'd need to find out what's available where you are.
If you're (understandably) cautious about taking the plunge into HE, why not consider signing him off sick for the meantime, during which time you can check out the options regarding what services will still be available to you/him once he's no longer on the school roll and what the LA can do for you, look into special schools and take it from there. If you get pressure from the LA (EWO service) to push him back to school before he's ready, then you could make the decision to deregister. It seems to me he needs to be away from his current school urgently so you can start repairing him and getting him ready for the next stage, whatever path you choose.
For now though, let him know you're on his side and working on solutions. I'm sure he'll find it hard to put into words how he's feeling as it's such an unusual set of circumstances for anyone. Perhaps that's why he doesn't want to go out today too.
Thanks streaky. We are going to get an independent EP involved so this might give us a sense of direction/some ideas long term.
I agree with you in the short term, he needs some time away and I will go and see the GP. Is this enough to get him signed off or will he need to go to CAMHS. I must admit CAMHS scare me as I have heard bad things about their lack of AS knowledges locally.
Our SLT is onside completely and has done a report setting out his conversations with her. EP has also acknowledged difficulties.
I will have a chat with GP.
I know that things have been deteriorating with your son for some time, so with that in mind it might be an idea to write down some of the changes that have happened in the last few months to show how poorly he's coping, and ask for it to be added to his medical notes. Start a paper trail so that it can be shown from the outset that you have his interests at heart and you're doing all you can to meet his needs, whether that be through home education or local authority provision. I actually think you'll do ok in this as your long term intention is for a suitable special school place - the LA may well bend over to help you in that case, but sadly nothing is guaranteed.
CAMHS is primarily about mental health, for which they are often pretty good but they're not so great for developmental disorders. This is why you get mixed reports regionally. It's worth a try though - you might be one of the lucky ones.
Good luck with the EP and GP.
Thanks. That is a good idea. I shall write a little summary for the GP. There is a paper trail as DS has written stuff for ARs and IEP reviews about how he is feeling and I have tried my best to get people involved and ask for advice at every step of the way.
The GP can sign him off but I'm not sure for how long. I did this with ds a few weeks before we deregistered - he was off a week and was only back a couple of days before we realised it just wasn't going to work. Your GP will be able to advise if he can continue giving sick notes, I'd have thought. Anyway, you're likely to wait several weeks if not months to get a referral into CAMHS so s/he may have to.
Thanks. He is shutting himself off today again, wanting to watch a Disney tv programme he has suddenly become obsessed with.
We've tried offering all the usual enticements which would get him outside - zoo, trip to London, Legoland. He just wants to be left alone.
It isn't like him at all. He can usually be persuaded outside. I suspect he is very tired and that isn't helping. He says he's not worried about anything. This isn't normal behaviour for him though.
I really wouldn't usually allow it but I suspect I am best leaving him be for today.
I've not got DS2 saying I'm ill and I don't want to go to school. He's started crying every morning because DS1 is coming home early and was really upset when he stayed off on Friday.
This should go in your notes for the GP. It could be early signs of depression and would justify being signed off from school.
He probably is tired. Anxiety like he's experiencing is utterly knackering .
It astonishes me that, as adults, if we go to the doctor feeling sad and stressed they advise us to change jobs if that's the cause. Yet with children we tell them they just have to get on with it and force them back to school, even when it's obviously what's making them stressed and miserable. If adults can't be resilient under those conditions, it's madness to think that children should.
I wouldn't take him to school tomorrow - he doesn't sound as though he's up to it at all .
It astonishes me that, as adults, if we go to the doctor feeling sad and stressed they advise us to change jobs if that's the cause. Yet with children we tell them they just have to get on with it and force them back to school, even when it's obviously what's making them stressed and miserable. If adults can't be resilient under those conditions, it's madness to think that children should
^ this ^
He needs the down time. I'd let him be. No pushing, cajoling or bribing. Just calm and predicable. No surprises or spontaneity. Think about using visual timetables, I know they are frowned on by some on here, but I find them extremely useful when ds is at his worst as we make them together and it gives him some control over what, when and how. I know the feeling that we must do something, that we must make it better, but sometimes that means doing nothing and waiting. He needs to recover.
It sounds to me like he needs a goal break but of course that's easy to say, ESP when you have another dc who doesn't understand why the other gets to have time off
If he were an adult he would be being told to rest, do things he enjoys, even go on holiday.
For me, taking ds out of school for a year was absolutely the right thing to do.
He is now back at school and doing well, but moves to middle school in sept so......who knows?
Total break, not goal break!
Bloody auto correct!
Thanks guys. I agree which is why I have been so hesitant about pushing him into school even if he will come in with me.
I knew he would end up withdrawing completely if it got too much.
To be honest, it's not like anyone is advising against this. OT and EP both know but have nothing to offer. School will do whatever will help.
Bitchface LA Education officer will doubtless say 'force him in' but who is she and what does she know? Stupid cow has just written a letter after I complained about the lack of OT for 6 months telling me that there was OT - obviously some secret programme that neither me nor school or the TA knew about!!
If Bitchface does indeed take that line with you, just calmly tell her that you won't be subjecting him to any more harm than he's already suffered. If you get your GP onside she won't be able to argue with you, and less so if you get to the point of deregistering.
His needs have to come first now, not her bloody attendance statistics.
How is he now?
Bitchface will undoubtedly call social services on you.
Ring them yourself first, so school will host the inevitable CAF before witchlady badmouths you to SS and creates a load of paperwork and hassle, whilst deliberately severing your contacts with anyone who's ever been helpful.
and yes, I know you're a lawyer, but the stupidity of some (not all: really not all, I've genuinely heard of some pretty good ones) LA officers knows no bounds
Thanks. I have involved my solicitor as the LA have done nothing to assist with this and we will be taking action.
I have also emailed the EP all the way through this deteriorating process, asking for advice and assistance at every stage. I have had very little save to suggest I stay with him and see if he can tolerate a short time in school. I have asked whether that is really the right thing to do if he says he can't cope and have been responded to with an eerie but deafening silence!
DS is holed up watching re-runs on the computer. We have offered to take him out shopping for a bike (he can't ride one but has been really wanting one) but he says no. He hasn't been chasing us for food today either. I had a chat and he said he just wants to be left alone
I said we would really like to go out together tomorrow as a family and asked where he would like to go. I made suggestions. He said 'if I go out it will only be into the garden'
I said - this isn't usual for you. He said 'I'm not usual I have Aspergers' .
I didn't want to out words in his mouth but I said 'have you had enough of people at the moment?' And he said 'precisely'
Blimey, what do you do? Maybe he's coming down with something but even then this is VERY unlike him.
Do I take him with me to the GP too or get an appointment to chat to her without him? Perhaps if I take DH too, he can take DS out if we need to talk. I will ask when I ring up for an emergency appointment.
IE, I doubt it matters. An emergency appointment tomorrow would only scratch the surface I presume, whichever way you do it, she's most likely going to say 'make a follow-up appointment'.
Either you'll end up going back without DS for a proper chat or going back with him to say hi. Happily, it's not whether you take him out of school, it's just how to go about it for tactical purposes at this stage. Do you think it would help your ds to know that?
There's a lot more to life than school (thank goodness)
I'm not usual I have Aspergers
^ That, I think, is a sign of him growing up. It is very like the type of thing my ds, same age and increasingly self-aware, would say. Has your ds read stuff on Aspergers for himself? Ds has found that really helpful.
I think you should go alone in the first instance to the GP, so you can talk frankly without further damaging ds's fragile self. You can always make another appointment for the GP to chat to ds.
Thanks again. You have been a real help. It is so hard to talk about this stuff with people who haven't been through it.
DS said at his AR, through a written piece he did, that AS might life hard for him. He has been saying for ages that he has no one to share his worries with too.
I have bought the usual Aspie books and big him up all the time but I think, as you say, this is a developmental stage of realising he is different and not trusting those not like him. He does ok with fellow Aspies though.
He really won't engage in even the gentlest of chats about AS now and whereas he was once interested, he now doesn't want to talk about it at all.
I have children who are very different to their peers. I always rephrase the negative "not normal/average" type comments using words like "very average" and "very run of the mill" to describe
"normal" to give a slightly different perspective.
I say very clearly that I am overjoyed with who they are.
I do too. But the thing is, he doesn't see it that way. In fact, in his summary for his AR, he said something like 'mum tells me all the things I'm good at ....etc but I beg to differ, AS ruins my life'
I have to listen to that.
I do it too, it makes little difference. At his worst, ds will tell me he'd rather be dead, because everything is so hard for him
Nope. You don't. Well, only in the sense of 'listening to how he feels' rather than in having to take it on board yourself. AS is entirely compatible with decent quality of life, and with a good long-term outcome. Not for everyone, but you could say that about any condition (being female, being Catholic, being Irish...)
Being educated with 29 supposedly-NT dc probably does ruin his life
I don't understand the distinction between listening to how he feels and taking it on board??
What I was saying was simply that you can tell him all the positives but it doesn't make him believe that having AS isn't a nightmare because for him, it is, at the moment.
I can help him deal with that but it doesn't make it any less true and having crippling social anxiety is certainly not the same as being catholic, or being female etc so I doubt the outcomes are balanced there.
I understand it doesn't have to ruin his life but he can't see that at 10. And the reality is also that, unless he is properly supported and placed in the right environments, his disability won't be compatible with a good quality of life.
I can listen, help but being dismissive is not the answer, as it wouldn't be for anyone struggling with mental health issues.
Sorry, I have re-read your post and I didn't pick up the last bit. I think you were saying the same thing.
Sorry - being Ms Touchy!
It didn't matter how often I told ds how clever he was, how kind and what good fun.
He just couldn't see it.
I think he can now, but I think we will always struggle a bit with his self esteem.
He is like his dad in that respect.
I think I should have phrased things slightly differently. I do t think statei g the situation (ie different is just different not worse) will fix things quickly. It is the slow build up that helps. I think it is VERY important regardless of perceived indifference.
I agree zzzz. Irrespective of what he feels now, it is best to keep on reinforcing his worth and the fact that he feels bad because of the environment he has been struggling to cope with. Not because he is bad.
Your posts prompted me to chat this through while giving him a foot massage!! I told him that I realised he had been saying he found things hard for a very long time, that he had said he had no one to share worries with at school and that he wasn't understood. I said I tried to raise these things for him but that I left him to cope with this and that I was sorry. This would not happen again.
I said that he was a fab boy and that everyone in the family and all our friends thought this but that he had been struggling to pretend to be someone else at school for too long. That made him feel bad about himself. school made him feel bad. But that was the fault of adults not him. I said all that was stopping as from now.
He lay there, looking a bit teary, then said 'thanks mum, now can you do my back?'
Oh it must be so wonderful to think that Mummy's can fix everything. It's your trump card.
He would have pointed out the inaccuracies if there were any.
Well done. If it was me I would be his in the loo having a little cry.
He definitely sounds a little depressed, inappropriately. I couldn't even begin to guess whether it's the sort of depression that's there because things in his life are depressing him, or things are depressing him because there's something more organic going on. Probably a bit of both at this stage. Hopefully some time out of the school system will help to sort all that out.
Love the outcome of your little talk. Made me nod and think, yep, that sounds rather familiar
Thanks for your help and thoughts on this. It has really helped. I wonder if he will be a bit more sprightly tomorrow. I would be nice to get out of the house!!
I meant that if the awful situation were fixed, the AS might be much less of an issue. And (this was a personal thing for me, really) that seeing your dc trapped in doom, gloom and anxiety can be so awful that there's a slight risk of the hopelessness becoming contagious.
No need to apologise, I completely understand what you mean. It was me being over sensitive .
My ds was showing symptoms of clinical depression at age 6 op so I can really empathise
HEing was the best thing I could have done at the time, but it was terrifying and I doubted myself a lot.
I just wish I had done it sooner tbh.
My half-in-jest comparators were a silly choice of characteristics... but the underlying point was that actually, much of his distress is probably about underlying discrimination (having to be shovelled into a system that his neurology simply doesn't suit is not equality)
In modern-day highly misogynistic societies, lots of maltreated women still want to die; school communities are often bad places for Irish Traveller dc; and being openly Catholic in Cromwell's time wasn't a good move.
In fact <brainwave> ridiculous though it might seem, I wonder if ringing the traveller education person might lead you towards some helpful resources on valuing diversity, and education not necessarily being synonymous with full-time schooling
Have you read any HE books op?
I recommend free range education, how children learn and grow your own.
There are also books that specialise is home schooling asd dc.
I found them very helpful.
One of the most enlightening things I ever did as a teenager was go underage drinking with my (also underage, and HI) friend at a Deaf club. Absolutely shaped my perceptions on
disability being multilingual equality discrimination and being efficiently clocked and served only lemonade the importance of diversity.
IE, this is bringing back so many memories of when we brought ds out of school, very similar circumstances .
We deregistered just before the October half term and I was (and still am) convinced that if we'd left him there till Christmas we'd never have got him back, emotionally and mentally. He was crumbling apart and we had major concerns for his mental health, which the GP agreed were valid.
I think you're handling this brilliantly and he'll be reassured to know you're doing all you can to help him. I loved your post about giving him the massage while talking! I think you have a long way to go to get him back on track but it sounds as though you have a great relationship and that will mean more than all the therapy in the world, in the long run.
Thanks streaky, he gets achey joints because of his Hypermobility so it is a good chance to talk as he doesn't have to look at you and can lie back in his own world!
We used to do a similar thing of passing a ball back and forth while we talked. The focus was shifted from the uncomfortable topic to catching and throwing and we got much more out of it. Not the sort of thing you can do with a stroppy 14 year old though .
I can imagine.
A MUCH happier DS this morning. I suggested the zoo and he said 'yes please mum' and he is now getting ready!
Maybe he is starting to chill out!!
Great news! Maybe it's because he knows you're working to put things right and feels more confident. Have a lovely, relaxed and enjoyable day. I hope this is the start of positive changes for ds .
Reading streakys post reminded me of how truly awful it was for ds this time last year. Ds was a mess. He could not function at all. He cried hourly, was beyond controlling. He was incapable of going out. Barely eating. No normal life was possible.
A year later he is so happy. It beams out of him. I am so tired sometimes but it is so worth it. He has a chance of being the man he should be.
zzzzz Did you have a moment of enlightenment when you suddenly saw the horror of what your ds was going through, and how wrong it was to keep fighting it? I certainly did - and I know an awful lot of people who keep pushing schools and LAs for help that'll never be enough because the system just doesn't fit for some children, and the only solution is for them not to be there. It must be absolute torture for them trying to function in hopeless conditions every day, and even worse with limited understanding of the situation and no idea how to end it. Still worse if communication difficulties mean they can't express how they feel so nobody can understand or help.
I remember the day I was called to school to take ds home and not bring him back. I'd already given notice that I'd deregister from the end of the week but once I'd done that they no longer wanted him. I went with him to the cloakroom to collect his things and he just fell, sobbing, against me - he was meltdown-ed out, and just weary and exhausted. I told him it was ok, he never had to come back to this again and at last he was safe. I swear to God, by the time we got back to the car he was two inches taller. The pressure on him must have been enormous but he started to recover the minute we walked out of the door.
I'm so glad your son is doing well too, zzzzz. It takes your breath away to see what our children are capable of, once you lift the stress, doesn't it?
Ds at school is very very disabled. Ds Home schooled is behind, very very different but ENabled. His language disorder (which was very very severe) is less of an issue. He is kind again and sometimes be is very funny.
School was cruel for him.
I realised if I left him there he would be ruined emotionally and academically.
Even if he learnt nothing academically at home he would be better off.
In reality the academic side is flourishing!
It is really interesting to hear your experiences as I suspect DS is very much the same.
I think there is this pressure to believe being educated means being in school and as you say, for some, that is too much in whatever form school takes.
There is also the view that teaching them to 'fit in' now is important for later life. But I don't accept that either as children with developmental disorders develop at different levels and in different ways - like normal kids but much more pronounced. Just because they can't do something at 10 doesn't mean, with support and confidence, they can't learn how to adapt at 18. Destroying their confidence is the path to nowhere.
It is difficult because HE is a massive decision if you work but I think having an open mind at what works at different stages of a child's life is important. Unfortunately, our LA system which is solely driven by the protection of resources does not allow creative thinking. Even if, in the long run, this is much more cost effective.
HE is a massive decision. For us it is a huge investment. If I'm honest I'm sad about some of the things I won't be doing now and the other children's lives will be different as a result. But it is only the same time as you would invest in a degree course. So much more important. So much more rewarding.
Yes op HE is a massive decision and one we have thought of too. But i worry how hard it would be to make it work.
It's good to read the positive outcomes for others on here.
We have also been told that we should try to make school work for ds and the routine and structure is good for him, but it often doesn't seem like its doing him any good at all and it's difficult to know how long to keep trying without letting things go too far for ds who isn't great at communicating his feelings.
Your ds sounds more relaxed now which will help you relax a bit too.
Hope you manage to forget about it all for a few hours at the zoo and have a lovely time
And I love him so much and he is flowering.
So much of the problems he was having with school are not really skills he needs for daily life. They are skills you need for institutionalised education.
It was one of the hardest things I have ever done, making that decision. I felt like we were stepping into an abyss. I still have days I wobble but they get further and further apart. We ALL love it.
Well EP emailed and recommended break from school. Blimey.
Are you all the more determined to do it now, then?
I know we often whine on here about about various people potentially being in LAs' pockets. but it's really nice to be reminded of the others. Your EP sounds like a highly professional, child-focussed type .
Well I think it means DS can have a break from the school environment at least.
Should I still pursue the GP? Or see if not going back and forth to school helps?
Cover your a* at the GP, I'd say. Also no harm in seeing whether she has any bright ideas.
Yes. I will hav a quick chat I think. See if I can get an appointment.
I think you should go anyway. If an adult was this freaked out by approaching the workplace everyone would insist on them getting nedical help. The GP would be signing them off, referring for CBT, talking about meds options and secretly wondering about PTSD.
When it's a dc (especially with a disability) there somehow doesn't seem to be the same social perception of excessive fear being serious yet treatable. Which I think is simply wrong.
I agree. I suppose the difficulty is that if you were placed in a very stressful work environment in which no reasonable person could cope, you would be advised to remove yourself from that - its not you, it's the job.
But I will chat it through.
But some people might thrive in that same stressful work environment, inappropriately.
It's pretty reasonable to assume that while some kids do thrive in a typical mainstream school (and many more kids are meh about it but have no choice) there will be some for whom the whole experience of having to muddle along with a load of other children, with all their noises and unpredictability, whilst simultaneously doing what the grown ups tell you to do in a way that is acceptable to them, according to rules, written and unwritten, is deeply traumatic.
Thanks. It is so sad isn't it? Two and a half years ago, we saw an independent EP who worked with DS, assessed him and talked to him for a couple of hours. She said to me after - was he like this before he started school? And I said no. She said 'this is a child who is not thriving in his environment'. I went back to school (his old school) and flexi schooled for 6 months. Within two months of that, we were out of that school and I HEd for 6 months.
Now I think we are back to that situation - he is not thriving in his environment is a good way of describing it. I have told him that is not his fault. He is so unlikely to want to talk to anyone about that though. He would find it so hard. Thank God for a decent LA EP and I'm glad we have a good GP.
The GP is our weak link. We saw the newer guy in the group, last week, though - the one who referred me for my joint problems when others wanted me to take tablets and go away. The first one to ever not grimace at DS1's bounciness and to crack a smile when he sat with his tongue out until I told him that it was alright to put it away, now. In a crisis, we've actively avoided going unless we've needed a prescription for something we can't get OTC for him.
The EP who has been assessing the boys seems good - though I shall reserve judgement until i find out what she recommends.
I think it makes all the difference if you have a decent GP. Ours is an absolute superstar, she listens, refers without question, believes and respects you. It makes such a difference.
Great news that the EP is on your side - also positive that she's been the one to suggest the break from school, rather than you have to push for it.
Yes, I'd see the GP to have everything documented on ds's records. It won't hurt and might even be useful for the paper trail.
Since my ds came out of school, I've bumped into several professionals who were involved in his assessments when he was younger, and they've ALL said off record that school doesn't work for children with autism, yet they're all directed to say that needs will be met and push for inclusion. It just isn't true, except for a handful of very lucky cases.
There's a world of difference between thriving and surviving, and too many people get the two mixed up.
"Surviving not thriving" - I think that about sums it up. You can just continue to force these kids I to the school environment, especially if they are compliant and want to please, as it seems like one more adjustment, one more programme, one more training course will make all the difference.
Ultimately, suppressing needs and who they are is not a road to mental well being at any age. With the right skills, they may be able to manage and adapt better as they get older but forcing them to do that now seems so pointless if it is damaging them.
I hasten to add that this has happened in a good, caring, inclusive school so you really have to wonder about the mainstream inclusion model for children with significant ASD needs.
Ds went to two uncaring schools and his experience was nothing short of barbaric. It still shames me that I let it go as long as I did, and let him suffer for so long, but I think it takes a while for the penny to drop that the professionals don't always know what's best for a child, regardless of what we're told.
When we saw my sons respitory paed and I told him I had taken Tom our of school to HE I was very worried what his reaction would be.
"Well, he will learn more at home with you than he ever will in school"
This was from an experienced father of 4.
It's amazing how many teachers and hcps HE their kids.
What does that tell us?
Streaky...I feel the same about ds.
But I - and I laugh hollowly now - trusted the "experts" knew more than me about my own child.
I will never forgive myself.
My son is 9 and is off today on his first ever trip away from home on a school residential trip.
It's something I never thought would happen. Ever.
HE can be a platform for so many things...for us it proved to my son that his welfare was the most important thing for us (and I had a 15 month old at the time too so it wasn't easy!) and once he knew that we would never force him into an unhappy educational situation again he - of his own accord - started talking about going back into school.
We chose a small village a primary, one class per year. Very child centred.
It's been great for him.
Just because you HE now doesn't mean you will be HEing forever.
That sounds very similar to DS' current school Badvoc and he still hasn't been able to cope there.
I do feel I have been jamming a square peg into a round hole for far too long. You can't make school, even a kind caring school, be anything other than a school with lots of children and changes and noise etc. I think he can't cope with that now.
But as you both rightly say that doesn't mean he won't be able to cope with it forever and dealing with now is what is important!
IE this has been such a great thread. I've just read it back and it's wonderful reading your resolve hardening.
You can only do your best and it sounds like your best is not to be sneezed at!
Well I can't think you guys enough for the support and perspective you have given me - and the strength to do the right thing.
You are amazing!!
Yes. Ds1 is in that small, caring village primary and they've been lovely with him - really bent over backwards. It still has lots of other children for him to contend with, though, and that will always be extremely stressful for him.
This thread has further strengthened my resolve to push for the school we want for him. 4 kids in a class. Very gentle with the boys. Encourages the boys' interests as a platform to build relationships. Very flexible academically. Boys mostly take lots of GCSEs but not all in year 11. If there is a love of, say, maths or history, they will run with it.
Wow - where is that??? PM if you are ok with that.
Sounds wonderful ouryve!
Hope it works out for you x
Inappropriately, I'm trying to set up a HE/flexitime arrangement for my DS1 at the moment.
If you're interested I am blogging about it here (trying to get my head around it) accidental-home-schooler.blogspot.co.nz
We are in a similar position to you in that the school are great, he is just in too much physical pain to cope. Even when we get a ramp (which we will get done at some point, I am sure, although we will have to fundraise first): then I do not think he has the physical strength to cope with the school day. In addition to his ASD, of course.
I agree with zzzz that it is a much better feeling than I expected. I have thought reading your posts that HE was going to be important to your son for a while. You are so good at fighting FOR him (we all are). You apply that mindset to working with him and he will go so far. I know of course it fucks up everything else you were planning to do/buy/become!
IE....you could always start your own school
Have done, inappropriately - let me know if you didn't receive it.
Thanks. Too far away from us!
DS has been signed off for 4-5 weeks. GP was truly fabulous and said exactly what you've all said about the fact that if he was an adult, there would be no question of him going to work to collect work if he had been signed off with anxiety etc.
She agreed he needed a complete break and we needed to look at a more suitable setting for him and she will speak to the EP.
Went out into the sunshine today and DS got his haircut! I need to get my boy back.
Excellent news! It makes such a difference when you've got supportive people on board, and I'll bet he'll be lots calmer when those 4-5 weeks are up. Maybe then you can use that progress to strengthen your argument for how damaging school has been for him.
Really pleased for you both .
Can I make a suggestion?
Keep a diary, use your phone to take photos throughout the day, paste them into a doc and write what happened/you did, how ds has been, how ds2 has coped, ideas for next days or thoughts on your observation.
I find this enormously helpful.
For mine st Micheal's outside Taunton would b the dream, but we can't afford it.
Thanks. Is that a school zzzz?
Interestingly, he passed a crowd of teenage foreign tourists in town today and stood to one side and let them past. He then just merrily chatted about where they might have come from.
At school, he would have run a mile. I also set him little jobs while out like asking where the meringues where. He did it no problem and even said 'excuse me' first.
Now if that isn't evidence that school has been f***ing him up, I don't know what is!
I have the same experience re the little jobs. It makes me feel that it ISN'T life it's institutional life that's the problem.
Sorry I was doing two things at once, I meant Mark College
Though I think actually ds will either cope in ms or be better off HE throughout.
Mmm, that's an interesting point as I was just saying to the GP today that even SS have a routine and a school structure and DS just doesn't seem to be one of those people who like that.
Its not just the education though. Schooling as originally designed, was intended to shape subsistence farmers and self-employed craftsmen into model factory employees.
And surely, even then, it must have been obvious that there were some square pegs who would never be made to fit round holes.
Should I just lay off anything like 'formal education' at home? I was going to let him relax, recharge and concentrate on real life
Dunno. Informal, interest-driven, learning is remarkably effective though (see how much we all know about SEN now )
You are good!
He is interested in learning about so many things!
I pulled right back and concentrated on feeding him up, and getting him fit and happy. But ds was pretty non verbal, utterly non compliant and miserable. We cuddled for weeks. We allowed him to control almost everything. We had long baths and even longer pouring/sandpit/sliding type (what you guys would probably call stimming) sessions.
Then we cleared our playroom and huge boxes arrived from ikea with shelves and a blackboard and yet more boxes from Absorbent Minds with weird and wonderful apparatus and then stationary and trays and cleaning stuff. Ds and I built the flat pack together (he is brilliant at this), daddy hung up the blackboard and we all helped lay out all the stuff and. DS1's CLASSROOM WAS BORN. It took over a week.
At first we just did play-dough and hammering type activities. I lay them out on trays a la Montessori usually on a Sunday night so he doesn't know what's coming and then he chooses from the selection. He usually covers about 70% of what I lay out. We also work on the iPad and have a "go to the cafe" and "learn to pee in the public toilets" type syllabus that we are working through.
Lots of Ds's maths seems instinctual rather than understood, so I made the decision to start right back at the beginning and work through from number recognition on (this is where the montessori kit helps because it is very unusual and tactile). He consistently scores almost 70%+ now at reception level (which given how much, more than, less than, taller, shorter, same, different vocabulary which he is supposed to find very challengeing). I expect to have covered most of year 1 in detail by the end of the year and be ahead next year.
Even more gratifying when I went to parents evening for his twin the teacher told me proudly that the class had learnt to identify the countries in Europe. She went on to tell me she only asked them to learn the ten nearest ones. Ds knows them all because I "allow him" down time while I tidy up the kitchen on a learn the countries of Europe app. . Obviously I don't really rate that sort of education but it made me chuckle.
If he chooses not to do something all week I get my thinking hat on and present it another way. He is unaware he is working at all.
It's quite fun and amazingly effective.
It is quite pricey though I think about £700 in furnitur/kit and books etc and even more on trips.
You sound awesome zzz, you can come and educate my son at home any time :-)
Wow indeed. I made extraordinary efforts when I HE for 6 months last time and the social 'curriculum' was such n important part of that.
This what worries me - I don't have the time to do this now! And if I do, his brother will get very jealous!!
I am also concerned that, at the moment, any kind if formal learning will be a massive turn off so I think we just need to introduce it gradually in another way.
We joined an HE wildlife group. Ds loved it.
We also took part in a forest school.
He also did a day at RAF cosford and met an astronaut!
All this is in the future for your ds I realise but HE doesn't mean it has to happen in the home!
I bought a second hand potters wheel at a car boot and ds did pottery.
He helped his GM make a costume for himself (a snow leopard) and he we met other HE parents and kids at local parks etc.
Without exception they were all being HE because school was harming them in some way I would say 80% had autism/asd.
Another thing I loved (ds2 was not school age) was going for trips and hols in term time! much cheaper!
We baked (maths) we did bug hunts (science) we read books and visited libraries (literacy).
We visited museums and talked a lot about history.
He watched a lot of DVDs.
It is hard work. There is no doubt of that.
But so worth it
I agree and we did lots of stuff last time. He is not officially HE at the moment but signed off and it is a complication with DS2 who is happy at school but will want to be with us if we do exciting stuff.
Going for a play this morning with an HE kid so it's a start.
zzzzz you're doing some amazing stuff .
We too spent the first year or so primarily on fun and relaxation, trying to bring back the happy child we used to have. It took a while because of the extent of damage, but we got there.
The main benefit for us was being able to spend as much time as we felt necessary on ds's social and personal development, which was being neglected in school and because he was in such a state in the evenings we couldn't do anything then, either.
He used to be incredibly aggressive at school and would lash out at the drop of a hat. We were able to give a high level of 1-1 support in social situations, watch for signs of losing control and pull him out before it got too much for him. I was also able to observe how vulnerable he was to bullying, something which I'd long suspected in school but which was always denied . He learned how to be resilient around unpleasant people and it's built his confidence.
Crucially we were able to pull him back to a comfort zone, from where we could challenge him in the knowledge that he could pull back again if he needed to - that made all the difference to his self-esteem and control of his anger. He's really rather placid now, as a result.
But most of all we found out who ds was when he wasn't under pressure, and that helped us to isolate elements of his diagnoses such as alexithymia, hypermobility and handwriting problems, and get help (medication) for his ADHD, which had been denied to us in the past because the schools wouldn't admit to the degree of management difficulty ds was presenting them.
It's all gone a bit tits-up with puberty, mind you, but I'm hoping it's a blip and we'll get him back at 17 (only three years to go ...)
Thank you justa , I am ridiculously serious about it and try really hard, so it's a boost to hear it doesn't sound too barmy! It changes as he does which is the key. The other children are remarkably understanding about it all. What I find hardest is that I can see some of the others would benefit enormously from a boost for a year of HE, but ds needs 1 to 1 .
I wouldn't do anything "educational" till he asks IE. Let his destress and then buy or make something that uses his academic skills.
Just a thought inappropriately - have you tried anti-anxiety medications? It made a big difference to my friend's son who presents very similarly to what you are describing in some ways.
Thanks Justa, but his anxiety seems to relate more specifically to school. He is happier out of it so I wouldn't want to medicate him to get him to go!
He has expressed a wish to consider an Indy SS. I'm not so sure but we will look into it. I think he likes the idea of playing with other children and can cope if they are 'like him'.
We went to see a friend and her son today who are HE. DS played brilliantly with him but he is a bit spectrummy too so they are both super straight with each other!
BTW - zzzz you rock. If you would care to open up a school, please put DS's name down.
Having a child like DS does make you realise how ridiculously outmoded schools are actually - I think they are fine for childcare and most kids clearly learn something. I'm not convinced you couldn't condense the learning but to a few years and do some of it over the internet and let kids do all the other stuff they do after school - swim, play music, play etc
I saw the thread but haven't been in the right place the last few days to click.
Let me read more. I suspect there are no certain answers.
Is his language good enough to spend a couple of days designing his perfect educational establishment. To talk about the benefits of education, what he would hope to gain, how he could access that, how you fit in, how your job/work fits in etc etc.
Record it, design it out of card, list things, talk about members of staff, peers, time of day, what the walls look like, what the lessons are like, how many peers, how often he will need to attend and what he will do in between, what you will do in between.
Is he mature enough to see that he has some responsibility in his own education, and that his actions impact on your family, and that he has some responsibility to at least think about what could work, how it could work and give it a try.
I feel from your posts that he trusts you to listen and try.
Sorry. The point of the exercise is to try to get to the bottom of all of the barriers. You could video it perhaps as clips might be useful for the future.
I felt a bit stupid posting all that. But I wanted to explain that it is both easier than you think and ridiculously hard work. You know this really as most of you have done it yourselves. Thank you all for being so kind about my witterings.
I'd open a school like a shot if I had any qualifications and any more time to read the reams of paperwork that entails. The truth is that I probably would work too slowly for most parents. I think children need time and developmentally delayed or stressed children (ooh I like the concept of developmentally stressed!) need more so. I have no problem with ds taking a decade longer to reach maturity than his siblings. I have a problem with the life he has been given being trashed in the grinding sausage machine of Normal.
I agree with "ridiculously outmoded" schools. Why do they make everything so hard??
I have pulled my ds out of 2 schools to nothing, and refused to place him in one more from the start.
The FREEDOM, oh the FREEDOM and relief. I have never regretted it.
I have also moved as you know. Again, the relief that crept over our family once the decision had been made..........
Leaving something that is not working, doesn't mean you haven't tried hard enough, and can be a positive and active step.
I love reading about people's HE experiences and how everyone approaches it. When I first started nearly a year ago, the very thought filled me with horror and a sense of failure. At the time thought it was my failure but a year on, I now know it was the school's/system's failure, not mine!
Ultimately HE is not the correct solution for my DS because he is severely dyslexic (amongst other things) so needs very specialist tuition that I can't provide. Being dyslexic myself, my HE sessions have shown that long term (and especially as he gets older), I can't teach him forever. But in our year together I have learnt so much about him that I never would have done if he'd been at school. Like streakybacon says above, I have also seen how vulnerable he is to being bullied. Because of his illiteracy and dyspraxia problems, he was wide open to being bullied by the more able pupils. This was something the school had always denied but it has all come out in the last year that he was teased (maybe not bullied, but certainly teased - when does 'teasing' become 'bullying' to a vulnerable child?).
And we've had so much fun HEing! My most favourite HE session was the day that it was announced to the world that Richard III had been found in car park. In one swoop we were able to study history, science, genealogy, archaeology, and DNA testing in the most imaginative way possible to a small child who can't read and write. What is more fascinating to a small boy than a skull and bones found in a car park belonging to a long dead king! We had such fun that day (and for weeks) looking into everything we could about the find.
School and the 'system' does make things so difficult. They just want square pegs they can bang into square holes.
justa, which meds please?
Roiselou - that sounds like great fun. HE is good for allowing you to capture the moment in the REAL world!
Zzz - you can recruit teachers to work at your school, you could plan and organise it!
Star - that is a simply fabulous idea. His new laptop (short break money!) arrived today. He is a dab hand at power points and youtube. I could leave him to do something fun around what he most wants out of education.
It helps me to know that I have HE as an option if ds1s middle school does not work out for him for whatever reason.
And ds2 for that matter.
I think the older the child the easier HE is tbh.
They can have much more input in their learning as star says.
(You ok star?)
Yes, Star. sorry I meant to ask that too? Hope you're alright??
Here's something to cheer me up -
the twunty ABA consultant who turned up at school four months ago on my instructions, who made DS cry by forcing him to sit in insight of the other children, who ignored me, who listened to and prioritized the view of DS's wholly useless NQT who thought he was just 'rude and selfish', who didn't bother to speak to DS, a 10 year old highly verbal boy, who produced a lengthy report (after two lengthy visits)full of graphs and long lists of yet more motoring tasks for his useless TA to do (yes, she would be highly objective in her monitoring) and who concluded DS just needed 'tweaks' to his schooling after commenting on the lovely, cosy warmth of useless teacher and crap TA...... has just chased up his £600 bill for his report!!
Yes just a report. He even charged two hours for him to write it!!
This bloke circulated his report to all and sundry before I had even seen it. It was full of complete shit - regurgitation of teacher/TAs whinging that DS didn't line up like everyone else and needed to be given set times in the day when he could speak to them to save him bothering them (after everyone else has spent 3 years getting him to talk!) Head thought it was a pile of shit and ignored the issue - DS has high levels of anxiety.
So, I thought, £600 for what? I complained to him about the way he had undertaken all this, disclosed his report without consent, upset DS and not even bothered to speak to him during two visits. I told him DS didn't need F***ING tweaks as he was out of school.
Response - he made some shit comment like 'it appears from what you say he is out of school' and then went on to moan that no one else had responded with their feedback about his report.
No one else? He means all the people who he copied in and who are not PAYING for his services. All of them thought what he was suggesting was useless.
I set out all my concerns.
The guy left it two months then contacts me today saying he hopes DS is now back at school. He ignores all the points I have raised but expresses his 'deep sadness' that his bill hasn't been paid and what a shame it is that he was not allowed to continue to 'shape' DS's education. WTF!!!!
Seriously, these people seem to know jack shit about Aspies and anxiety and should say so. He was just going to dump highly complex monitoring on the TA and then set DS on a path of 'learnign how to listen to people' because that really is the core of his problems.....oh that and lining up or sitting on a chair rather than the carpet.
£600? I thought people who were ABA consultants would be above all the "does he take sugar" carp
Leaving aside everything else(!), disclosing the report without parental consent is appalling! My DS reports are stamped all over that they are not to be disclosed without parental consent! Is there a professional body you can complain to?
I would refuse to pay and tell him to take you to small claims court. When he does, then tell the judge that he disclosed it to everyone without permission.
Anything soothing behind the bar, btw?
DS2 has been screechy all day - probably because he was out on a school trip, yesterday and not helped by there being no internet at school, today.
DS1 is ornery. And won't leave DS2 alone.
And my guts are getting in on the action.
I know. I think it is shocking that he circulated a report without consent. He didn't even say it was a mistake. He was full of 'I didn't appreciate there would be a problem, I thought we were working as a team'.
Yes, but I am paying you not them. His report could have been very undermining if everyone else had not agreed that he had got DS's profile very wrong.
It was full of crap like - we don't use words like 'anxiety' as what do they mean and they are judgments...!!! Yet he doesn't mind using words like non-compliant and tantrum. Very judgmental if you ask me.
So he wanted the TA to spend time spotting when DS was refusing to do anything and analysing why. So if crap TA was being unreasonable (not an unusual occurrence) and DS was stressing, she would probably record this as DS tantrumming wouldn't she? Cue expensive ABA programme to make him do as he s told.
Talk about heading in the wrong direction.
That was my feel from all the ABA people we spoke to, I know others have had good experiences but I felt I got all I needed from Schramm and my own approach.
I think they are used to being paid to work in schools to help non verbal children with challenging behaviour and they an ascribe whatever motivation they like to that behaviour to justify an intervention to 'normalise' them.
This is clearly heavily based on the views of others and hardly objective. How the hell could they possibly distinguish between a sensory response and one for another motivation? Bollocks, shmollocks if you ask me - for Aspies anyway.
Oh and I don't think there is a 'professional body' for ABA peeps is there? Probably part of the problem.
He must be in cloud cuckoo land if he thinks anything to do with SEN is 'team work'! At the very least he should have sent it to you first for your comments, and only after your revisions (and only with permission) sent it on to everyone else.
Exactly. I suspect it was deliberate. He seemed to be very enamoured of the NQT who was very good at using the 'I know we have to make adjustments for DS but I worry how he is going to cope long term if he is not in class all the time, every day'.
Yes, don't we all, but the answer is not to force him to be in class all day, every day because then he really can't cope and ends up being out of school altogether.
Oh look, isn't that just what has happened.
I think he wanted to deliberately circulate that view in the expectation others would disagree with me. They didn't.
That and the fact that he thinks he is the dogs bollocks which is, again, my experience with ABA consultants. They act like they are mini gods who can tell what a child wants or needs just by looking at them. Why bother actually talking to them??
I don't know Bad tbh.
It's over. We have the LA. We have the school for ds and the transport. We have the school for dd and subsequently baby ds, and now, we have the house.
It's over and I think I might be falling apart. I miss my dad. He was given 3 weeks to live 2 years ago and in that time I had to appeal the AR statement to remove all of ds' provision, and fend off a DLA fraud allegation. Just a couple of months before he had attended an NAS Help! course off of his own back.
Since that day we've been on the warparth, on the run, fighting forward and defending from behind. We didn't know if we'd be able to get onto the property ladder here at all ans houses were going unseen and for above the asking prices which were completely out of our maximum budget. Though we have just done it.
I don't know who my DH is. I don't know if I'm the same person that married him. And my periods have just returned after 10month old baby ds so I expect there is also some hormone stuff going on.
Pay him and forget about him, it's not worth it. I had a daft and expensive ed psych experience that sounds similar. Honestly not worth your tears. Pay and run far far away with your lovely boy.
It's time for happy times that do work.
Am so sorry.
You have never really had the time to grieve properly for your dad have you? So lovely that he attended the NAS course! You must miss him very much.
It's so hard.
We push ourselves and ours marriages and other relationships to breaking point at times and then sit down after the battle is won/things get easier and think "who is that person sitting over there? Do I even know them anymore?"
And then we look in the mirror at the grey hair and worry lines (this could just be me though!) and it's the same.
I wonder sometimes where I went. And when I noticed I wasn't me anymore.
Moving house is uber stressful (I did it twice in 2011 - yes, I know!) and I am sure your hormones are not helping ATM either.
It's doubtful that either you, your dh, your dc or your marriage have come out of this unscathed.
Time to relax (I know, I know...) and start putting yourself back together again.
Star what you describe is expected after all you've been through, it is a massive comedown from all that fighting. It is not unlike PTSD. If you're not feeling better in a couple of weeks please see your GP
star I cross posted there. I lost my dad very quickly too (6wks) a few years ago, I miss him every day. There is absolutely nothing positive to say about it. A week after the funeral dd3 started having seizures again. Then we hit horror school.....we have been in constant turmoil for a decade. I grab the happy times now because I know how rare those days are.
Oh yes. I look in the mirror and wonder why on earth my dh could ever find me attractive now. I used to be.
DD said to me this morning. 'Mummies are cross, tired because the baby feeds all night and they have to put on lots of make up to cover up all their spots don't they?'
I AM tired, I am spotty and god knows I'm cross.
I'm really sorry to hear that star. It does sound like shock or stress. Moving from one period of change to another with no time to think or adjust.Take care
IE...paying £600 for an EP report that told me nothing I did not already know and which school ignored is one of my biggest regrets.
I know my son was not the most in need at his school.
There were/are kids with more complex needs.
BUT my son was being failed - also by a useless NQT strangely enough - and I had had enough.
I thought - and it makes me laugh now - that if I paid that would help the school and ds would get the help he needed.
Sigh. Yep, I was that stupid.
Too many kids like my ds are sitting at the back of classrooms slowly getting further and further behind and less and less engaged with their education and mire and more hampered by their anxiety but, hey, they don't throw chairs or bite people so that's fine, right!?
Just gets to me sometimes.
Sorry IE for hijacking.
There is now a society for ABA regulation. However it is new and those for whom it has the potential to affect businesswise were quick to volunteer their services. This would be expected so I don't dismiss it on those grounds and have joined as a lay member/service user and will wait and see. I think the top people who are setting it up have good morals and ethics and hope they manage to keep them.
When ds1 was a baby we went through a really tough time (as you know)
It wasnt until he was toddling and finally meeting his milestones (and sleeping for more than 2 hour stretches!!) that I fell apart in a spectacular fashion.
I managed to keep it together through hospital admissions, possible cp dx, constant worry, no sleep, countless hospital appts....and then when I knew I could stop worrying I collapsed and ended up in hospital with a suspected stroke.
(Sounds more dramatic than it was really)
Ds1 was 17 months old at the time.
I suppose what I am saying is I get it.
I am not the mother I hoped to be, that's for sure. I am exhausted a lot of the time, a bit shouty and dh and I are like ships that pass in the night sometimes!
But I am trying very hard to view this as another stage I have to go through. Not an end point, a stop in the journey iyswim?
Sorry for thread hijack op!
Don't apologise Star. I'm glad you explained it to us. The whole process is very traumatic without the death of a loved one to deal with. I can't imagine how tough that was.
As for being tired and spotty, well I think I will start a club for that. I never had this many spots when I was teenager!
Badvoc - I agree. As long as our kids 'look normal', job done. That seems to be a favourite one from SLTs who have been in the class "you wouldn't know it was him who had Asperger's". Well he's fine then, as long as he didn't look different to you. Sod how he feels or copes.
Badvoc - it is amazing how you have to get used to living day to day. You can't think too far ahead as you don't know what is going to happen- or I can't. All you can see is the next battle.
I find that stressful but DH really can't get he head around that. I think perhaps we are forced to adjust quickly and earlier and they are cocooned by work to a certain extent and still have some expectations of normality.
Expectations I have long since surrendered!
I had that attitude wrt my son from pre school.
I am spotty too ATM! Have also lost my voice again for the second time in 8 weeks.
I sound like Barry humphreys (and nit in a good way!)
<gets coat and leaves thread in shame >
And apologies - this thread has got so big i thought I was in the goose and carrot, earlier
It's been a long evening.
Apologies not required. Hope you got your drink.
Maybe we should open a bar here, star
I have a mug of sleepytime tea. Off to the new Sainsburys, tomorrow. Tummy permitting, I think there will be wine in my trolley.
Oh yeah. I'm used to just carrying a virtual hip flak so any thread is a bar these days......
Post-adrenaline flop + post traumatic LA stuff + bereavement
+ ongoing ASD stuff + small baby + middle child 'neglect' guilt
+ house move + no money + career break + hormones
It wouldn't be odd to admit symptoms with that collection of life events; it might look a bit odd if you denied feeling completely burnt out.... You're not in Herts now If you want counselling /CBT / Prozac or just a series of chats with a decent GP, it's safe to see the dr and get them.
IE, I totally get what you mean. However I think it is something you may need to look at again as he grows - he may well develop the social skills to cope but if he doesn't, I think it's worth flagging up now.
Mareeya, I attempted to seek some help 18 months ago but the GP stated that 'disagreeing with professionals' plus 'paranoia' were symptoms of a personality disorder.
Having said that I do think I'm a bit too awkward for CBT.
I feel like I need to be signed off work for 6 weeks, but how does that work when you are a SAHM? Does the NHS send round a nanny, cook and housekeeper?
Star a friend of mine, who could also be described as 'too awkward for CBT' found Cognitive Analytic Therapy extraordinarily effective.
Thank you. I'll have a look at that.
TBH, I think MN has been the most effective therapy. I don't really feel trapped, helpless or like I have many problems. Burdens, yes, perhaps but I have always been able to figure out ways of relieving them to an extent, but I think I'm just so tired of THINKING.
DH would give me a week off to the moon if I asked and he would be fine with the children (though I'd come back to chaos), so really I'm not sure I have very much to complain about.
Perhaps I'm just so tired of being the one who decides everything. Where to live, what school what solicitor, where the cups go in the new house, what's for dinner, what after school activities, what paint, where to go on holiday and when, what the kids wear. I even decide when dh should buy me flowers or whether we should go out and then I book the babysitter.
But you know, DH has HAD to be a supportive passanger. It wouldn't have worked over the last two years if he hadn't been.
"Perhaps I'm just so tired of being the one who decides everything."
I understand this. DS will do whatever he is asked to but he won't think of the things that need doing and do them for himself. So we would never have a holiday, christmas, go anywhere, do anything, if I wasn't thinking and planning for all that as well as dealing with DS and school, LA etc.
It is exhausting.
That should be "DH will do what he is asked to"
Same here, thankfully dp is mostly compliant
Hi Star, sounds like you need to find a tiny bit of time to rebuild yourself. I have been through simultaneous bereavement and diagnosis and currently going through the joy of statutory assessment and hopefully a move to special school. I have done so much hanging in there over the last year and my general well being definitely shot to bits. I also have a lovely cyst on my hand which I think is caused by holding the ipad and obsessively reading about autism, SN law etc! I am the kind of person who does thrive in a crisis and falls to bits later on so I am trying to pre-empt this a bit. I am getting very pissy over trivial day to day stuff which is a sign I think that I am affected by all of this. Running really helped me last year, mentally and physically and that all went out the window for a bit but I am starting up again now. Helps with how you feel about how you look too. Any interest really, that is not about SN and fighting the system! :-)
I second what DNC says (not with the cyst on my hand though)
It would be odd if you didn't need to be crap now and again, Star. You are so superhuman so much of the time.
And it does sound as if you have had to run the family 110%. Which is hard. And three young kids is hard, on its own, without everything else.
Oh star -sorry but you just really made me laugh!
Disagreeing with professionals? Check
Paranoia - check
That's what wrong with me!
I have a personality disorder!
My dh is the same and sometimes I resent it tbh.
I resent the fact that the last 10 years of his life have nit been totally governed by ds1 and his issues.
And that isn't fair.
star if they won't actually die in your absence, take the time off.
And yes ALL decisions are made by me.
My lovely DH is the same, too. Seems to be a common thread!
He was the same when we first got together, though. Totally indecisive. He's never been very confident with all the SN stuff and even when I've bought a book on a particularly topic that I've considered an easy read he's said it all goes straight over his head because he doesn't understand all the language.
He is beginning to find his voice at appointments, though and he will be attending AR for the first time, this year, after doing a couple of school visits with me.
Practical advice re: iPad - thick cushion on lap! I can't actually hold mine for more than a few minutes at a time because it bends my fingers too much and hurts them. I've tried and failed to find a case with a sturdy stand like the one I have for my kindle, but they don't seem to exist.
This has moved on a lot since I was last here but it's a very useful thread, I think. It shows how much we have to deal with as well as our children's needs - that's something that's always hacked me off when professionals expect us to do so much for ourselves without their input, like we've got nothing else to keep us busy .
I've been frowned upon for not appealing the decision not to carry out statutory assessment on ds just after he was deregistered. Well yes, it was the ideal time and the right thing to do, but as my elderly mum's primary carer I had to facilitate her move into sheltered housing, I had ds bouncing off the walls after the crap he endured in school, and the LA casually threatening me with a child protection enquiry for having the audacity to deregister him and know more about the law than they did. And much much more besides. I think people forget that all the rubbish that happens to others' lives also happens in ours - we just have children with disabilities as well.
It's sad to read that so many of us have suffered bereavements while caring for our children. It can be difficult to get the time to grieve properly and that can have a lasting effect. I'm sorry for all your losses - I lost my mum and sister in the space of a year, both suddenly and no chance to say goodbye, yet we've still got to pull ourselves together and battle on for our kids. There just isn't a choice, is there?
Husbands seem to have the same universal characteristics in the SN world! How many of yours are accepting of diagnoses and difficulties? It seems quite common for men to shy away from the fact of their children being less than perfect. DH doesn't handle it well (yes, I've had to make all the decisions here, too, and persuade him to agree ) but he does accept that I've never been wrong yet. Even so, he still thinks that ds is 'normal' and is blinded by how well he presents during the good times, and gets cross and impatient when ds doesn't live up to expectations. Like someone commented upthread, he seems to think that as long as he looks ok then he is, but he forgets about all the crap that goes on inside ds's head and how badly he functions. It's tough to handle at times .
I have kind of the opposite problem in that my parents died before I was 30 and so never saw my kids. This has left me looking after a profoundly disabled brother who has cerebral palsy.
So, when people moan that their kids books aren't being changed frequently enough in school [grrrrr]
IE, that's very tough. Does your brother live independently?
My father died a fortnight after DS3 was born. A few weeks later we realised DS2 had verbal dyspraxia and started intensive therapy. Not much grieving time there!
Useless husbands huh...
Picks up Halo,
No. DH definately isn't useless. But some times there just isn't the room or the time for two decision-makers and now it seems DH has given up entirely.
Though to be fair he did decide and then buy matt paint for the kids bedroom walls and I asked him what exactly he was thinking
DH is accepting of the boys' diagnosis, and recognises some of their difficulties in himself but he does sometimes teem with resentment that we have to do certain things in a certain way with them. I had to warn him that there was no point in him getting cross with DS2 for his screeching, before he even had chance to let it get to him, last night - because there's been times when I've had DS2 screeching, DS1 ranting and DH moaning at the pair of them. I usually go in the kitchen and shut the door on the lot of them, at this point
Just as I do with DS1, I often have to have the conversation with DH, pointing out that he can't keep doing things the same way and expecting a different result. I also have to frequently coach him in empathy, since it simply doesn't come naturally to him, especially when he's tired or stressed. I never thought I would ever be doing that with anyone, since I'm not totally free of the familial spectrummy phenotype, myself!
Sorry, I just said useless in jest...wasn't entirely serious.
Though reading this thread has made me realise school is probably not going to be the right place for ds1. Personally we don't like to give up control which is why he has never been to nursery or any other setting. I will find it really hard to give up that control when it's time for him to attend school. We even sit in all of his ABA sessions when we could have that as free time, how sad is that.
Dev..it's not sad.
I felt that way and buried those feelings under immense pressure from my dh and family and it had disastrous consequences for ds
So, go with your gut.
My Dh is no where near useless. He's what makes it all ok.
He also put up with me.
You know what? I want to homeschool.
But dd would be devestated at the prospect and DS would be fine but I'm so tired atm I need the childcare that school provides.
Star...home schooling isn't going anywhere.
It's something you could re visit in the future when you have more energy/time.
It's is harder with a home schooler and a baby I must admit (ds2 was 14 months old when ds1 was home schooled)
this thread is bananas! The twists and turns are making me a bit dizzy.
Why do you have to homeschool everyone?
What do you mean zzzzz?
Who is saying home school everyone?
It's my fault. I hijacked.
I wouldn't have to homeschool everyone, but I figured it was easy to do a round the world kinesthetic geography lesson without having to factor in the school run for the other kids........
Star, can I just say? Since I started homeschooling DS1 I have just thought again and again - I wonder why Star doesn't want to homeschool her DS1?
I completely completely agree that you need the childcare right now. It is something when you are a bit stronger - maybe when DS2 is in preschool?
The reason I wondered why you had not considered homeschooling is that you are so brilliant at managing your son in comparison to the professionals, teaching him would be an absolute doddle. You know what works and you would have the chance to do it. It will be the right time when it is possible, if you see what I mean, if it is the path that is right for your home.
And my husband is a mixture of one-step-behind-me and Star's willing-abnegator-of-decisions.
I only get tired when he kicks up a fuss about a decision I am making when he hasn't bloody had to do the research to get there.
bad sorry that was in response to star I am a little disinhibited on painkillers.
The school run started being a total pain here but actually has become just a part of our routine.
Can I just say zzzz that your comments earlier in this thread about reflecting on and taking photos of DS really resonated with me, I have been making a real effort to write down some reflections at the end of each hs day and it is really helping. Thank you for the tip.
Total x posts!!
Justa...I asked star the same question when I started to home school ds1 3 years ago
She would be a far better home educator than I ever was!
It's strange...prior to actually home schooling I knew nothing about it. I thought it was something only right wing religious Americans did (sorry!) but it didn't take long to see how wrong I was.
The HE boards in MN were a lifeline for me.
Don't worry - homeschooling would be an absolute last resort for us. DS1 and I would drive each other round the bend!
I have found this thread thoroughly inspiring. Ds copes with school and learns lots, he probably manages better than I ever did in reality, I was just more compliant than he is. It makes me feel a lot better about the future knowing that if secondary fails that I can HE and that there is a wealth of experience among you all
Polter...the he board is fab.
Such kindness and knowledge in one place...very much like MNSN
This has been such an empowering thread
I can't tell you how different this week has been.
DS and I went into town today. He paid for the bus tickets and told the driver where we were going.
He had a MASSIVE chat with the guy in the Games Workshop, resulting in mammouth war game and date to return tomorrow (he says 'I need to bring my brother' OMG!! )
Then, wait for it, drum roooollllllllll, on the way home on the bus, he continues prattling about Warhammer but stops and says 'I'm not boring you am I mum?'
OH MY GOD!!! I mean SERIOUSLY MID MONOLOGUE
I just hugged him and said 'DS you have got your mojo back'. Cue very embarrassed DS.
I know it is not all plain sailing from here but what does school do to children like this? Really? He has learnt more about social skills in a day then he would in a term at school.
Home ed isn't perfect though, and it depends a lot on which part of the country you're in. Some places there's lots going on and a great deal of choice with HE groups and activities, some good LAs and some awful, it can be a bit quiet and cliquey sometimes. And you still get bullying children and pfb parents - you get those anywhere. The beauty of HE is that you can do everything at your own pace and pull back if things don't feel right. You have control, which is something we don't get much of in the SEN school system.
I agree. With HE there are massive drawbacks but control is so attractive when a lot of our stress and trauma comes from having things snatched entirely away from our control.
And from constantly having our family life invaded.
Homeschooling is emotive for me. Besides the childcare thing there is something else.
My Dad spent a year after dx stressing the importance of not upsetting the school/LA etc. as they are the professionals, and know best and parents are a bit pita at the best of times but moreso when they have a child with SN. He was a universtiy lecturer in a teacher-training college after 35 years of teaching in primary, specialising in IT.
Then he saw what we were doing, what we wanted for ds and how unreasonable and defensive the reactions to this, and he did a u-turn. He stated that he was doubtful any school could meet ds' needs after all and the teachers he was being forced to pass by pressure from his university were very illequiped for teaching NT children, let alone complex children.
My Dad enrolled himself on a NAS Help! course, started to scan local shops for deals on resources that would be useful for our ABA programme. He told me that homeschool was a much better idea for ds and he told me too that I could do a good job of it should I ever decide to and as soon as he was retired he would be available to help/support/deliver. He adored ds and only ever saw the positive in him, treating every unusual aspect as a positive to be harnessed and developed.
He passed away 2 years ago, a year before retirement.
I would never homeschool as well as if he was around. He made netts of polygons and sewed mathematical designs onto card, and despite being an IT specialist was a great believer in pencil and paper. He taught a whole class of East End disaffected boys from a very rough school to Morris Dance to a standard that got them invited to international festivals on expenses (though he often drove them all there in the back of his transit), and taught them all how to play instruments despite never being able to play one himself. I just don't have his mind and would never live up to it.
I'm also not very disciplined.
That's wonderful news IE. How lovely to see him beginning to blossom already .
I have yet to do ANY group HE stuff. We will probably start swimming lessons soon, but only if ds wants too. I just have all the normal people the rest of you would have. The only real difference is that between 9 and 3 ds doesn't go in to a school.
I don't see why you couldn't hire babysitters/tutors if you needed time with only one child or just time off.
'I'm not boring you am I mum?'
"I don't see why you couldn't hire babysitters/tutors if you needed time with only one child or just time off."
Money, I would think zzzz.
For me anyway. If money was no object, I would get specialist tutors in. But HE means less work opportunities and less money.
Yes, for us it was money.
We live in a village too so not much in the way of a thriving home ed scene.
But a big city would be different.
Your dad sounds like a lovely man, Star. You must miss him a lot.
Home ed IS emotive and full of pros and cons. I know ds has missed a lot of opportunities by not being in school, but in truth he could never have accessed them because he never had the support he needed to enable him. We were thrust into this situation and make the best of it.
But he also gets a lot from HE that he'd never have got in school. Above all, he's calm and controlled whereas in school he was a violent, raging, frightening beast. He's got a couple of friends now whereas he never had any before.
And that combination of pros and cons will be different for everybody, whether they school educate or home educate. Because every child is different and has individual needs.
From what I know of you from MN I think you'd be disciplined enough to HE, but you have to be ready to make that choice if it's to be successful. Maybe you're not there yet and may never be. If school works for your family then that's fine - and lucky! The HE option is always there if there comes a time when it doesn't.
Tutors have been a great help for us and a way of giving me time to do stuff of my own, without being attached to ds all the time. I get university students who are more willing to work MY way than dyed-in-the-wool school teachers who insist on following NT to the letter. My students want to learn about ds's conditions and support him the best they can, and they can be fairly flexible with timetables and schedules. Plus they are VERY cheap .
yes for us money too.
We will need a second income shortly, and we're absolutely broke from our journey so far we have nothing available for babysitters etc. so that happens extremely rarely.
I like the idea of running a small livingroom homeschool where I get the basic rate from the government per child plus DP for their statement needs (i.e. SALT/OT etc.) and I hire in specialist staff and take no wage.
If i was doing it formally and with other people's children I'd be much more disciplined and perhaps the children can work together to make the money go further, write to people to get free or cheap visits/resources etc as part of their literacy/groupwork/communication/budgetting lessons.
Your dad sounds lovely, Star. I'm all choked up after reading about him.
Yes money, and space of course. My problem is that I doubt I could find a tutor who could do what I do in the way I wan it done.
I don't think HE has to be expensive. It's like anything else, you pay for shortcuts.
Yes. I think you BECOME controlling.
You hand your child over to the system that pretends to know what they are doing, and you are let down, and your child is damaged, and this happens over and over. You try and change that by changing schools/teachers/years/tutors/TAs/HTs/attendance levels etc. but promises are made and not kept.
And then you become a control freak without trust.
Anyway. I have an idea.
Perhaps I'll pull ds out early at the end of term, perhaps 2 weeks from the end (As he'll be tired etc etc. being so young etc.) as the HT told me this happens sometimes (not sure whether she was encouraing it or not but at least it sounds doable) and I'll have a go whilst dd is still in nursery in the mornings.
The only problem is he will be tired. Then again I guess if you can make it work then you can at any time....though mid winter is a bit challenging.
I agree Star. Like someone else said on this thread about the time I have spent fighting for DS, what could happen if I applied that time to DS. Or words to that effect.
Losing control to people you don't trust - not always becasue they are malicious or useless but often because they clearly don't understand is the pits. Receiving a bill for £600 for the pleasure of their witless advice, really was a new low for me.
I agree about your dad btw. What a super bloke.
I honestly think it takes a good while to see if it is really working, and there are strange patches where we sort of grind to a halt.
What would you teach and how?
Streaky - where do you get your tutors? Do you advertise?
Let's all go to tribunal to get statements rewritten
so only a "StarDad Memorial" flexi-free-homeschool can fit the bill... And then the powers that be will have to fund it
Lots of the non-SN mums keep dc off cos they're 'under the weather', 'looks a bit peaky', 'over-tired', 'going down with something', 'just wanted the dr to check his chest' and similar half-truths and nonsense.
And we drag our stimming, shut-down, anxious, stomach-in-knots, kicking and screaming dc in, day after day, all term, without complaint ( on here doesnt count). FFS. We're the parents. If they need a day off, or a week, that's our fundamental responsibility. Truancy laws notwithstanding.
Well my ds' placement costs around £40k with transport, so I reckon we could hire a classroom in various locations around the world for a month at a time and maybe even have one on the trans-siberian express.
Or we could spend the first 6 months planning for something that would meet the sensory/rigidity/independence needs of all the children. Finding common interest/ground and learning about empathy and looking out for each other would be a major focus.
Who wants to be on my staff?
Me, me me!!
The system is bonkers. Mareeya - you are so right. The time I have spent dragging that poor child into a hostile environment.
Never again. Never. It might not be HE all the way but it is not going to be m/stream.
And to think this moronic Government is trying to kill off flexi-schooling. How much more money does it cost a country to pay out for inadequate support for years?
I simply can't understand why councils don't want something that is cheaper and better. ESpecially since there are good staff trapped in the system. And even the lazy, aggressive, empire-builders should like that, taking the credit for our hard work would make them look really good, and smooth their paths for promotion.
Because it isn't about money.
It's about control. They want control.
Then they're shit so we want control. But they won't give it because that would be admitting that they're shit and that their work is pointless.
So I removed ds from a neglectful preschool where he was regressing and then asked for support with his needs. The advice was to put him back into the preschool. In fact, we were offered additional funding for him to do extra hours there , but no funding for an ABA tutor to the tune of the same amount.
I could teach art history and Tudor history and make cakes
(I can also do country dancing. It's my secret shame)
I could do politics and citizenship!!
I can also play netball!,
I've had two tutors from University Tutor and they've both been excellent.
The first was a final year psychology student who'd done placements in autism assessment and had a decent understanding of how to work with children like ds. As she approached the end of her time with us, her sister was just finishing A levels and moving here to come to Uni, so she joined us. She already had an awareness of ds from her sister and she settled in brilliantly. She's done some amazing work with him in English - don't know what I'll do without her when she graduates in 2014 .
And I only pay her £10 per hour , but I give her lunch as well.
Blimey, that's good.
There are none in this area and the nearest ones all charge £20- 30 an hour plus travel
Try UK Tutors - I know some students advertise on there as well.
But yes, if you don't live near a big university town it can be difficult to get student help.
Hmm, we just need to bring the ABA people together with the PDA people, and then set them to work devising a curriculum for high-functioning, non-ASD adults with rigidity and control issues
(I mean LA staff... but maybe the uni students could go in undercover as temps, and start the programme. Normally you'd need consent, but I'm sure an ethics committee would understand
But tell me this. Which one of us control freaks would be the HT?
I shall just have to be your undermining deputy then!
I'll be the executive head then.
I can feel a multiple-job share coming on ...
Doh, grrrr,. I should have thought of that!!
It sounds diverse! Can ds and I come a visiting?
Agh damn it. Why don't we just give the roles to our kids with a bit of guidance now and then. They can run the school, set the curriculum, rund the budget, write the IEPs.
Bet they'd do a fantastic job too, and even if it won't be perfect, they've hardly got much competition have they?
Multiple job share!
I will do Thursdays.
I will bring cakes.
That would be a massive improvement on people setting targets for them to be met by provision kids don't want or need.
Have I mentioned I will bring cake?
I feel this is important and my input is not being respected.
Have I mentioned that I can eat cake?
I feel this is important too - especially when it is washed down by classy bottles of cider!!
Me too please
Not sure what skills I'd bring, IE has already bagged politics and badvoc doing cakes... maybe something arty crafty or ethics?! Ds would make a brilliant teacher
Don't you work with people who have self-esteem issues Polter?
You can answer the door when the LA visit.
So the classroom must have a sunny conservatory where the 'management' can drink cider and eat cake?
Yes. The kids can make those too I'm sure after a number of lessons.
But only if I can bring my Lambrusco with the screw top!
I feel I must point out at this point that i will not - as it goes against deeply held beliefs - make cake with vegetables in.
It's just wrong.
But i make flapjacks you would sell your grandma for
I am actually quite effective at work, it is so much easier 'doing interventions' with people who aren't your own child.
Oh no. Our kids won't have self-esteem issues ANY MORE. It's those poor downtrodden LA folk who have suddenly decided they need to monitor our school like they've never monitored their own.
I think polt could research and find all the OT gizmos, she is brilliant.
Yeah, I knew what you meant! But they are not worthy of my skills.
Oh zzzzz that's a lovely thing to say
<bags science teaching job>
Biscuits. That's about the best I can offer I'm afraid, but they are rather good. Scones too.
Ds can run the martial arts class - he has a black belt y'know <proud>.
Yes. Beyond redemption Polt <nods with plastic knowing smile>
Badvoc You can bring whatever you want. This is an INCLUSIVE school.
Can we be a Jedi faith school?
this thread is turning into one of those post-dinner late night save the world chats
<am not a new poster, just trying out my new name>
"So the classroom must have a sunny conservatory where the 'management' can drink cider and eat cake?"
Only classy boutiquey ciders doncha know - none of your white lightening (she says showing her age!) crap. I am not that inclusive
Did I mention that Harry Hill was helping me move house?
Speak for yourself zzzzz
zzzzz can teach maths iirc
So, we have an assortment of random subject teachers, plenty of children, a staff room, with catering...
Wouldn't it be lovely?
What was all that Harry Hill thing about then?
In my day the tipple of choice was Diamond White.. Though the more sophisticated ordered Martini and Lemonade <vom>.
I always liked Merrydown
Well we have to be out of our rented house by friday, so we have arranged cleaners for Thursday.
DH has taken Wednesday off work to move our stuff. The house is around the corner and our furniture isn't worth much so we're not getting removals.
We have allotments behind our house and garage access. So we will be taken most of the stuff (and the vast contents of the garage, out of the back and down the garage access road) to the front of our new house.
On Tues and Wednesday the British Film Industry is shooting Harry Hill in the road we are moving from AND to.
They came around yesterday to ask us to keep our cars off the road. Fine. I suppose. Though they might get the odd shot of a bed.
Then they said that they'd be parking a large lorry in the exit of the garage road and asked if we needed to use it, could we go the other way. Er, given that I have to stop every 5 steps with most of the items, that would be a no.
So they said they'll be bringing a pick-up truck anyway so they'll take our stuff round the long way in their truck.
So there you go. Perhaps not EXACLY Harry Hill, but close eh.
Ah, it was 20:20 in my day
I quite fancy being a Jedi.
I have a slanket that doubles as my Jedi master robe.
As master Yoda says;
"There is no try; do, or do not"
I'll be head of Explosions and Interesting Smells, star.
I'll probably be on the skittle vodka tbh. yay.
Silk Cut and ridiculously short skirts.
When I was in the UK anyway.
I was Marlboro Lite in my days!!
I like the Yoda quote - that could be our school motto!
We have a business plan - let's write to Govey!!
That's what I thought IE!!
On a proper stone scroll over the doors of the
piss up room conservatory!
I swear to god, I nearly used that quite at my last - and dreadful - meeting with the HT
Sort of wish I had now....
Ds2 (4) is interested in the post of head of interesting smells ouryve.
It may have to go to interview.
His smells are...erm...vwry interesting.
I'm going to use it along with Moondogs 'You are what you do, not what you believe'.
And 'The road to hell is paved with good intentions'.
Much better than crappy walk the walk stuff.
I like that Yoda quote. DS1 would have no idea how to contradict it when he's being argumentative
Love moondogs too.
I truly believe that.
'The road to hell is paved with crap IEPs and make believe provision' more like it
Lovely trips to interesting places like old castles and ruins they can run around (they can't break anything as its already in its!)
Yes. Of course. It will be MAINLY school trips.
DS comes on much faster when on holiday so I think it will be essential to the curriculum.
We could do ballroom dancing!!
And pottery and weaving - on a loom!
They could weave their own ponchos in the school colours!
I.e.(Whatever colour they want)
Ah, Diamond White
<joins zzzz in vintage staff corner>
Weaving is maths right?
Trips to big open places with empty parks as all the other kids are at school and to the seaside.
Just mentioned the Yoda quote to DS - he immediately corrected me as I had managed to misquote Yoda! we are on to a winner with that one.
Weaving is cross curricular. We can ignore Gove's distaste for arts and crafts, along with anything else that doesn't involve sitting in rows reciting stuff. (Because my boys don't need teaching how to memorise stuff - even DS2 is plainly accomplished, despite reciting it all back with b substituted for all the consonants)
Actually - DS2 demonstrated to me, yesterday, that he can read words that matter to him. Give him an new iPad app and he will hunt for the credits, no matter how the word "credits" is presented.
...you know what's at the sea side?
And fish and chips.
Ds1 will be delighted with all this
And lots of birds. Enormous ones!
Ds would find ballroom dancing challenging. Country might work better........ooh or
"you know what's at the sea side?
And fish and chips."
Owls and falcons are very important.....crustaceans anyone?
DS's first page on his power point for his AR:
"I hate dance". Can we opt out of that one?
I can do country dancing.
I do a mean scotch reel.
You can opt out of anything....
I can Strip the Willow, with socks up or down (single sex school)
What about this for staff uniforms???
This is me on Youtube doing country dancing.
I don't know who put it on there. I'm the girl dancing with the boy (my brother) after the nursery rhyme (my other two brothers).
WARNING This is the MNSN drunk thread
IE that would be challenging. Well actually terrifying!
Well star must wear her green skirt.
Incidently that strange looking man is my dad, and the woman playing the piano accordian is my mum.
Von trapps a go-go!!
And the others on their are his east end class who were still hanging around at 15/16, and their girlfriends who bagged a free trip to disney provided they did a load of training.
Your dad sounds amazing star.
You are pretty amazing with your DS too.
I think two weeks off quietly is a great idea. You can get a "feel" for how you work together I think.
I thi k you have all the skills to HE, Ms Von Trap
My green skirt WILL NOT FIT, and I cannot last a whole dance these days
OMG I LOVE that staff uniform!
If that skirt still fit it would be a miracle!
What a top video!
I love this thread!
IE it is really lovely to see how you've gone from utter despair to utter silliness during this thread, the sense of a weight lifted shines through. Your ds is very lucky
It is al your lovely help and perspective what's done it. Seriously, just taking a few steps back from the daily crap gives you a sense of control and to see DS being so happy today was great.
DS has chatted about war hammer to DS2 all evening and they have been happy little brothers
Your happiness and humour since you made the decision to take him out speaks volumes to me IE.
I was the same.
So glad your son is happier already.
The only way is up from here
This is actually a really inspiring thread.
I had been thinking of wanting to start a Justa-home-ed-support thread but thought it would be a bit me me me (so I started a blog instead which is even more me me me but never mind)
What I was going to say was, anyone fancy a SN HE support thread?
See. My parents took us out of school for 6 weeks to peform at Disney World.
Them both being teachers (probably obvious. We all had to carry disney passports and my dad had a special approval stamp for his beard) and everything so school obviously aint all that.
Anyway, thanks for letting me share that video and little whinge, and for your confidence in me as a HEer.
I hope that your ds goes from strength to strength with the new arrangement IE, temporary or not.
And great that things are going so well justa!
"I hate dance"
Something DS1 wouldn't argue with. He's completely anti sport, too. No PE please.
We can wear him out by stealth. Lots of walking (though that's getting harder for me) and lifting and just being generally busy, busy busy.
Penny, while I subscribe to the "Many Worlds" theory which posits the existence of an infinite number of Sheldons in an infinite number of universes, I assure you that in none of them am I dancing.
''The Gothowitz Deviation''.
We often mutter (^sotto voce^ , of course) "Sorry, Sheldon" when a dictat has been issued.
That early episode when Sheldon sits in different places in the cinema, testing the acoustics? That's what got us hooked, because DS1 used to do that in cavernous buildings, multi-storey carparks, etc
Another Sheldon here, but at least now he can take the mickey out of his Sheldon-ness and laugh at himself.
He admits that he doesn't have imaginary friends, only imaginary colleagues .
Ds will definitely not be joining any dance class. He was once excluded from a disability social club for not joining in with a dance activity (there was no choice), after responding with the mother of all meltdowns <shudder>.
No singing either, if that's ok. Mind you, that would come as a relief to everyone else if you heard him.
Oh, I love BBT!
(We have the box set)
Singing and dancing for those that would like it.
Welding and lathe turning for those that wouldn't
Maybe we could have Sheldon's Green Lantern t-shirt for the student uniform .
Loving the staff garb, you groovy babes .
Another Sheldon here, but at least now he can take the mickey out of his Sheldon-ness and laugh at himself.
After his Saturday night up-chuck, DS1 was unusually lucid on Sunday. I joked about whatever he'd eaten that had upset his tummy probably joining the long list of foods he refuses to eat. He joked back "Yes, it's item 358a."
This boy is going to have a very detailed room-mate agreement when he grows up, I can just see it!
Can you imagine two of them sharing? Dear lord!
I asked ds this morning about school, what he likes and doesn't and explained that some children don't go to school are are educated at home. He was absolutely horrified and disgusted at the thought of it.
DS1 would love the idea. He frequently tells me he never wants to go to school, ever again.
When I was selling the HE idea to ds, I typed up loads of pros and cons about what it would involve and cut them all up into strips, folded them up tombola-style and we went through them together - a sort of visual checklist of what was good and bad about it. I hadn't told him I was thinking of HE, just that I had 'an idea that might make us happy again' and this would help us decide. Almost everything ended up in the positives pile.
I think it's important that HE is a joint decision and not something that's imposed on the child, or it won't work. If they feel that they'd be missing out on more than they'd gain from HE they're less likely to settle into it. This worked for us but then school was Hell on earth for ds and there wasn't much he'd be sorry to leave behind. Not every child would feel the same way.
My ds only missed play times with his friends.
That was it.
He hated everything else and was made to feel really ashamed of his sen.
I think the only reason he went back to school was the social side of things tbh.
Ds had one bf and 2 or 3 others he would play with sometimes.
Far more bullies sadly....
Stop blowing the poor child's mind polt.
Just testing the water zzzzz
In reality I could never HE. But it was an interesting question to pose to a child who at times claims to hate school and gets very anxious, whilst at other times he absolutely loves it and misses it terribly during holidays.
So I just had a conversation with an Independent SALT that goes into ds' school now and then. She said she had observed him and that he is working at capacity and there is nothing I can add to his learning there.
Sorry. I'd contacted her with a view to perhaps setting some targets for us to work on at home/in the holidays etc, as I do a mini-programme and know HOW to teach but struggle with WHAT to teach for a child with a language disorder.
That was the answer I got. She's extremely well respected.
I think it's worth asking the question, Polter. We tend to just roll down an expected path and I expect our children do too, and unless it's asked we wouldn't know if they'd prefer anything different, or even have an opinion.
Most children just respond with what they know. Children who've never been in school think it's completely bizarre that some children go to school, because HE is all they've known - that's their normality and anything else is considered to be a bit deviant. Both sides of the same coin, really.
Children do just often follow the order of things too. DS has never asked to stay off and not go to school. The OT said months ago 'he only goes to please you' and this has proved to be the case.
We went to the library this morning and sat chatting and he said it was such a stress pretending to be like everyone else all of the time.
I think friends can get you through. DS had times when he had friends but this has become harder as he has got older. Once he had no one to trust - adult or child - it was just exhausting.
But this is what I have pieced together. The reality is I feel it has been so hard fighting DS's corner all these years that I have tried not to respond to every singly stress episode and have tried to inform staff about his needs gently. When people are pulling in one direction - he needs to be in class all the time - and you know that is wrong, it is hard to stand against it without losing 'hearts and minds'.
However, this is the logical conclusion of those times spent cramming the square peg into a round hole and I am horrified at how much worse it would have been if I had blithely followed the ABA consultant's 'normalisation' agenda.
Star...sorry, I am a bit confused.
Is she saying that she can't help him anymore in school? Or that you can't add to his learning?
She's saying that I can't add to his learning.
She's brought in by the school at a general consultancy level to give ideas about class teaching rather than individual.
She's pretty well-known and I have contacted her in the past but we lived too far away then. She says she has seen ds a while ago, and now, and he has made a huge amount of progress, he's in the right setting and working at capacity and so nothing I can do outside of that will add, but simply be a waste of money.
Get a piece of paper write down the firsts number of things that ds's language impacts (focus on things like, safety, happiness, aspirations, social acceptance, understanding)
Write down how you would tackle them and start work.
One at a time.
SALT are not usually unhelpful I this way. Why do you think she doesn't feel he could use more input ?
Yes. Truth is I'll do it with or without her or anyone elses help. I always have.
I don't know how she can make the judgement she has without seeing him at home or having seen him learning in other environments iyswim.
The school are good, but at parents the Music Teacher telling us that he found that lesson especially difficult, which was surprise to us because after a term of 10min lessons he is not only playing all fingers on the piano but composing his own 2 hand pieces. She didn't know this.
I'm not sure they know he can read either, because he's unenthustic about Kipper and doesn't focus or pay attention, but reads avidly from a couple of technical birth preparation books we have lying about.
Anyway, I told her it was going to happen anyway so she's going to think. I'm pretty disappointed tbh.
Unless the school SALT has got to her (very bad relationship, which is partly why I have approached her and NOT the school SALT).
Anyway, - that discipline issue I have, it tends to disappear when I have someone to prove wrong!!!!
Sorry for garbled post, but you seemed to get it. I am very focused on language that helps ds day to day and less worried about pronoun muddling etc which people tend to ignore anyway (unless they are little sisters who are trying to be horrid). SALT here seemed to agree with this which helps.
I think if you want to help him academically there is a lot of vocab and language that needs to be learnt for maths. It is the single biggest hurdle to ds's learning. The questions are designed to test language rather than mathematical ability IMO.
The polite way to say, I don't like that, that freaks me out, no I'm not being silly I can't cope, are invaluable, as are all the excuse me's etc.
Knowing your own phone number and address, full name, school and what to do in an emergency are good.
Using the telephone has been really great. Ds call his Dad at work and asks him out to lunch. It started as "it's me, are you coming" and has developed into two mates meeting for a quick pint type chat.
The phone thing is a really good point, because it strips away all the non-verbal stuff and the distractions and just focuses on communicating with speech, hmm, who can ds phone?
Ahh, good idea. Phone and language of maths.
DS can tell the time but has no clue what an hour earlier that 9'Oclock is.
Or 3 more than 6, despite being able to do complication sequencing of numbers (his way of getting round me telling him he can't make a tape measure).
Thank you zzzzz. this is what I wanted. Cheque is in the post. Do you do money back guarantee?
Paul Fowlers App something like primary maths skills builder, is brilliant because their are hundreds of questions and if you flick from reception to year 1 to year 2 you can really see the progression of language (terrifyingly hard for mine, who finds the maths quite straight forward). I think you could pull a syllabus from that quite easily. That's my plan anyway for the next bit.
No cash back guarantee but I would love to hear about things hat work and don't. (Shameless gannet)
The phone really highlights deficits. I still have to support ds as he and Dh get out of step sometimes, but the improvement is huge. I hope I'm laying the groundwork for friends in adulthood.
polt you could start mobile to home phone, work up through Dh to friends and finish at phone for opening times at zoo. I am happy to receive calls but am pretty sure your ds would cringe at the thought!
zzzzz you are good. hats off to you for coming up with such brilliant stuff. I am storing it all for future use.
thank you dev though obviously I live in the middle of nowhere so my brain has to do something.
and I think about this crap all day because obsessive interests DO NOT abound in my family
Yes, zzzzz is very good at this stuff, I've seen a glimpse of the progress her ds has made in the less than a year since we first met, and it is mind blowing.
Well star, I think what she told you is a crock of shit.
IMO the secret is to find the hook for the individual child, whether that be maths, whatever.
I realise I am teaching my GM to suck eggs here but until he feels engaged in his learning he won't progress further.
...and I say that as the mother of a child who could barely read and write 18 months ago and who was crippled by anxiety and low self esteem.
His year 3 teacher told me that "you might have tomacceptmthat the bottom sets are where your ds belongs".
He has just come back from a 4 day residential trip with his class and his room won the award out of nearly 30 rooms for best behaviour and attitude. (I think he wore the same pants for 3 days, but you cant have everything)
He is now in the top reading group, is a level 4 for maths and we are working on his spelling.
I simply do not understand how anyone can write off a young child.
It is lazy and unacceptable.
I think she's seen the difference between how he was there the last time she saw him and this time and decided it is huge progress. I'd be inclined to agree with this, but I have seen him when he wasn't there at all iyswim. She hasn't.
That's AMAZING Bad, pants or not!!!
'IMO the secret is to find the hook for the individual'
Of course it is. I dunno what she thinks I'm doing. Other children do piano, karate whatever, after school where discipline and practice are expected of them as well as enjoyment. How is what I want to do different?
You can do it, just not with her blessing. Do you need it?
There are ballet teachers who try to ensure exclusivity too. Some people are weird.
bad WOW and YAY!
polt you made me cry
I don't need her blessing. I was hoping she woukd give a bit of direction, but tbh, the zzzzz manual seems appropriate, doable and importantly supportive, so perhaps I'll just stick with that.
I always know HOW to teach with years of ABA stuff, it is WHAt to teach that I struggle with as it is too vast.
wow, I have missed all this as we have been out 'Warhammering'.
Now talk about functional language skills
I understand what you mean about where to start Star. I know exactly what DS's problems are but having a pathway to build skills from scratch is easier said than done.
Zzzz's approach is helpful. The beauty of DS not being at school is that we have focussed on these practical things. So instead of 2 x 20 mins SLT groups a week with a useless TA and peers he can't relate to, he has been in shops asking where to find meringues, in the library explaining he needed to replace his library card, paying for tickets on a bus and WARHAMMERING with a bloke he had never until yesterday!
You tell me what is likely to help him more in life???
So, yes, there probably is a limit to what they can do in school. In life, building skills is a limitless task.
You don't need the professionals for a 'programme', if you know your dc and their needs. They do sometimes come in handy for trouble-shooting, second opinion, someone to bounce ideas off.
Just dont call it ABA for SLT skills, call it specialised parenting and encouraging his daily life abilities... and when you hit a bump, you can ask for tips 'because my approach is just simple mothering" <head-tilt> <dozy smile>
The only professionals (NB including those whose main profession is parenting) who really know about integrating theory, practice and individualisation, to the level expected on here, are those who learned it via their own dc. With psychology or teaching undergraduates who moonlight in SEN / caring far behind, in second place.
The high flying academics are in their own elite race, but seem to have something in common with our rag-bag half-marathon,
The rest will catch up, but the cutting edge is here
There is nothing simple about effective mothering.
Yes, but I think it is why we lost our first tribunal. We coukdn't afford many professionals so I was doing most of it.
They rules that it was nothing special, just parenting and woukd continue without a £23k Funded ABA programme.
It didn't of course because it wasn't sustainable at that time, but I think that was the rationale. That his home programme was 'just' parenting and we shoukdn't get money for that,
Whatever you do will enhance his learning.
I am certain of that.
But you can avoid a lot of flak (and thus avoid distracting professionals into timewasting defensiveness or feelings of inadequacy) for doing
weird stuff aba/ diet / home ed / therapies etc, simply by integrating it into normal life
I see what you mean star (cross posted) so can understand why exploiting similar ignorance now (rather than fighting it) might feel odd
Bad and IE, how amazing are your boys
Star...every therapy and every intervention that ds has had we have paid for and provided ourselves. From workbooks, computer programmes to rrt.
Schools only contribution (other than the teachers comment above) was to put him into a speech and language group! Wtaf?
One of the only areas ds had no issues!
My epiphany has been a simple one.
That if I wanted to help my son I had to do it myself, and not rely on someone who would get paid whether my son made progress or whether they did their job effectively or not.
Yes PLEASE can we start a HE support/picking zzz's brains properly thread?
She's amazing. i want her bottled
The beauty of DS not being at school is that we have focussed on these practical things. So instead of 2 x 20 mins SLT groups a week with a useless TA and peers he can't relate to, he has been in shops asking where to find meringues, in the library explaining he needed to replace his library card, paying for tickets on a bus and WARHAMMERING with a bloke he had never until yesterday! You tell me what is likely to help him more in life???
What a ludicrous argument that children need to be in school to develop social skills! Day to day interactions like this, on such a regular basis that they become instinctive, are what matter and are infinitely more beneficial.
Yes, I agree.
Having said that my DS1 does benefit from the social interaction in school, but the pain makes it impossible for him to have that on the days when he is home anyway.
An. The old socialisation argument!
I never understood it tbh.
Why is it seen as "normal" to put our dc with other dc of roughly the same age and expect them to all perform to the same level in the same way? When will that ever happen to them again?
When HEing ds met so many different types of people and did so many different things that he would never have for to do at shcool (the HT at his current school actually admitted this when we went to see her about him joining the school, in fact she was very positive about HE)
I think with older dc it's even easier as they can volunteer their time at hospitals, schools, volunteer centres etc.
Well yes. But if your child DOES have friends and enjoys playing with them and talking to them, that is lovely. I do feel very sorry for him that he has been taken away from so much of that. But as I say the pain gets in the way when bad anyway.
It's different when a child is not coping socially at school.
Yes. My ds missed the social side of school very much.
In fact, I see school as a totally social thing for ds.
Any improvement he had made is down to us.
It if he is happy and being made to feel supported at school then I am happy.
I'm trying to arrange flexi-time at the moment (is different system in NZ) so he can go in when he's strong for half a day.
We have also asked if we temporarily home ed due to illness whether he could go in for playtime on good days.
HT being positive about both, which is nice.
DS ended up not even talking to any other child at school. He wouldn't even be near them. School is a social hell for him. Not much chance of learning or practising social skills there.
I can see the reasoning if children are getting something out if it. DS2 moans about school as DS1 is off but he is popular, has loads of friends and loves playtime. He would lose out if he was HE.
For DS, needing to learn basic skills and to find his voice, how is that achieved amongst a load of stroppy 10-11 year olds? What skills are his peers modelling that he needs for later life? It's all just a load of codswallop to justify mainstream schooling.
SLTs drive me mad in this regard as how can children who need to be taught skills specifically pick them up by osmosis from their peers??
Yes, she is.
The thing is DS1 is great with his friends in small doses. His friendships break down though because he is too intense/hard work/stroppy/anxious for other kids to want to play with him all the time.
So I increasingly think flexitime would be an ideal solution.
We shall see what's possible at the next SF meeting (like a CAF)
JUSTA and and . You may of course pick my brains any time you like.
I feel more confident about HE the longer we do it and I suspect it will get easier again once I have an idea as to what ds is doing for secondary. I do think there are some brilliant brains on here and pooling our thoughts is really helpful.
I wonder how many of us DO HE, and how many think about it and how many would if they could?
Yes the thing is I think I was very nervous about HE but increasingly I realised that I knew how to do it already to an extent, because I had had to do so much social skills teaching/behavioural analysis/teaching behaviour/compliance already. It was just taking that and getting to apply it to something interesting.
justa - I am sorry your DS is struggling. I have flexi schooled for a period as well as HE and flexi school worked well.
It helps a lot to realise that we haven't always outsourced educating children to schools. HE is no more odd than not having your shopping delivered or using ready meals or buying your clothes off the peg.
In fact a "tailored" education is a much more accurate description of what ds need. Oh Lord by son is bespoke!
I need to cook breakfast for the little princeling. I'm on a feed him up campaign.
Here is the lesson I've just planned for your amusement
I have to be very careful that every lesson is freestanding and can be extended if necessary but must not depend on anything else we've done, because we have no firm timetable/curriculum. So I am using themes. They also have to be short, because he is in pain and so limited attention span.
Here are some sentences which tell the story of the potato. But my computer seems to have malfunctioned, and there are some extra words in the story! Can you figure out what words are the right ones?
The people of Peru have been eating potatoes for thousands/dozens of years. In fact, bits of pottery/plastic found from 4000 years ago show the potato, and suggest that they also worshipped it. When the Spanish conquered/photographed Peru, they brought the potato back to Europe. But the potato was not immediately popular/peeled amongst Europeans. Many English preferred to eat/drink parsnips. Some Christians complained that the potato must be bad, because it was not in the Bible/ Beano. In Germany and France the people were hungry because they did not have enough wine/food but they still didnt want to grow potatoes! In Germany, the Emperor had to send potatoes into the countryside accompanied by soldiers! The French people were also very suspicious/sleepy of the potato, so the king arranged for a field of potatoes to be planted in his palace grounds. Cleverly, he ordered his soldiers to pretend to guard it very carefully and keep it a secret. That meant EVERYONE wanted to know what these new potatoes/pillowcases were, and the French people stole potatoes from his palace and started to fight with them/grow their own. The potato was very popular in Ireland but then the Potato Famine occurred; this was a time of hunger/celebration when the potato harvest got diseased and no one could eat it. Because of this, many Irish people emigrated to Australia, Canada, the United States and even New Zealand, in search of a better life/coffee cup.
Star just out of interest, can you tell me who is doing ABA with a child who has CP, I will be interested to know what they are doing?
Oh, I thought it was you
Why is it seen as "normal" to put our dc with other dc of roughly the same age and expect them to all perform to the same level in the same way? When will that ever happen to them again?
Yes, extremely odd, really.
One of the SS's I visited had all of the primary school children in one room for a very loud music session. I mentioned that DS1 would never cope with that and they mention that they work on de-sensitisation so that children with sensory difficulties with such a grouping can join in. I stopped at questioning what for. Standing in a small room with 90 other people, making a lot of noise is not an essential skill for adult life.
Both of the SSs I visited had horribly echoey halls used for assemblies and dinners. Completely unsuitable and one of them was so bad I actually flinched as I walked in, and that was with us being the only people in there.
The indy school I visited took me into a lovely carpeted room with ornate windows and dark wood panelling which absorbed all the glare and echo and said they don't other with assemblies, but sometimes have small groups gather in there, if they need a bit of space for a meeting. Far more sensible, IMO.
DS1's current school doesn't insist he attends assemblies and when he does, he's often allowed to sit at the side with teachers, so he feel less crowded in and can make an easy escape if it gets too much.
Oh, we are, I thought you knew someone else as well.
justa that's a great activity. Short sharp bursts really suit some children.
I like your word choices, Justa. DS1 would deliberately get some wrong because it's funny, of course!
As an aside, some of the "comprehension" exercises done in schools test very little (and even less about understanding of the actual text), particularly with kids like ours who already have language difficulties of some sort. There's some good examples here - www.freelists.org/post/etni/Fw-nonsense-text-to-teach-reading-comprehension - many kids could just blindly answer the questions, correctly, not demonstrating that they understand anything, since the text is plainly nonsense. Justa's text tests comprehension much more deeply. I might just steal the idea!
Yes, what i'm hoping is that I can gradually increase the level of difficulty a bit.
but to be honest, if it just stays at this level, great. He's learning about an interesting topic and he will almost certainly giggle and try to get some stuff wrong like ouyye's son, but that giggling shows he gets it, doesn't it? Mostly I want him to cover interesting topics in a way that doesn't make his eyes glaze over.
I always take it as indicative of understanding when ds1 takes pleasure in wrong answers
He found my massive Collins hachette French dictionary, earlier. Dh was somewhat dumbfounded by the "letters" e kept handing him, based on facts he had found.
He would be easy to HE in this respect. The barrier would be our collective sanity.
The senco mentioned to me that change of placement would be opposed on grounds that he is making progress. The boy makes progress, left to his own devices, ffs!
Yes. That is the problem, surely!
DS2 got extremely cross with me today when I tried to show him how "bottom" was not spelt "bottum." He said he was GOING to spell it that way. SO glad I'm not HEing him too!
Ds1 gets entrenched with wrong spellings. I don't/won't engage with him about it. I just say "the correct way is xxxxxxx, but you can spell it that way if you like.". That sort of sticking your heels in is always a sign of stress in mine.
YY, I think I will do the same in future.
Have you tried bigIQkids.com?
Very good spelling games (although it's a bugger to set yourself up as teacher and start a classroom, you need to watch the video). Very non-pressured. DS1 loves it. I am thinking of registering DS2 as well.
(oh, and FREE)
Marking the bigIQ bit...
This looks like promising fodder
Oh that looks good. How much does it cost?
I joined WondrousWorksheets for $5 for a year (twas a special, I think it is usually $13). similar stuff.
Found the bbc did some good educational stuff....games, quizzes, worksheets etc (and if curse free)
We also used maths whizz for maths which was very good but can't remember how much that cost.
For older children, have you seen the Khan Academy
DS responds really well to the numeracy stuff on there which builds gently.
There was an article in the Guardian about it a while back.
That's a very good thought inappropriately, I knew of the Khan Academy but hadn't thought of it for maths. Might try
Mathletics do a HE reduction of about 40% too.
Also, in terms of social skills, has anyone tried watchign the Young Apprentice (or even the Apprentice if you vet for swear words!).
There are loads of really great social skills - good and bad - on display. Non verbal stuff, boasting, interrupting, listening
DS LOVES it and we talk about them throughout.
We used Maths Whizz too when ds was younger, but I'm not sure if they still have a HE discount.
Conquer Maths is excellent too, and goes up to A level now. There's a huge discount available as well.
I haven't seen The Apprentice IE but will give it a go for social skills. We use lots of tv and ds is quite good at working out other people's emotions, motives etc, but is still poor at identifying those things in himself .
For teens, have a look at Lie To Me - ds picked up loads from watching that.
Have you seen the Socially Speaking board game?
I made a lovely little card game for ds, where we had to roll a die and say different sentences in different tones of voice and volume. It was very effective .
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