School refusal

[Mother in Need]

have always had problems getting my son to college, but this has now become total refusal to go, he jumps the bus, or sits on the stairs holding on to the banisters while screaming and won't be budged, and I am afraid this is a battle he has now won as it is just taking too much out of me (and him!) and I feel I should not push him to go somewhere that is too hard for him to be.

 

BUT what do I do now? He is finally on stage two of the statementing process, but it will take many more months before any help is implemented (if at all). Keeping him at home has it's down-sides: a) school is the only break I ever get from him (this sounds selfish, but I need that break in order to be able to care for him) keeping him at home will mean the end of my business, which keeps us fed, keeps us in this house, I like this work and in a way need it, this business was meant as a way to fund my other children through higher education, and keeping him home means losing all of this, and would mean many very difficult changes for him like moving house. c) having him at school gives me a precious 45 minutes ALONE with my youngest (8) who so desperately needs some attention from his mum. d)I haven't yet been able to go to desperately needed appointments for myself (i.e. dentist and counselling) and certainly won't if he is at home 24/7. e) he just won't listen to me re teaching, so home educating isn't really an option and anyway he is so much brighter than I am and so much more knowledgable on many subjects that it would be better if he taught me. e) all those reasons I can't think of right now but that are there somewhere, like if he stays home than my youngest will want to stay home as well etc etc.

 

Where do I go from here? What do I do?

[Hectorshouse]

MIN I don't know if I can offer any advice or anything more positive than I know how you feel.

 

T has been at home since his last exclusion in June and since our move to Devon, this also did mean that A (NT teen) also stayed at home due his problems and also seeing that T was getting all this support etc... School for me is our only respite as well, which I know it shouldn't be but then what choice do we have! All I can say is keep banging on the doors of those who can help, SS's CAMHS particulary CAMHS pester and pester away, tell them as you have told it here, be desperate and not proud ... my poor SS's bod came last week and I barraged him for 2 hours, gave him a 6 inch pile of paper work to take away, punctuated everything I said to him with RESPITE RESPITE RESPITE ... fortunately he also came on a day when I was suitably drawn, depressed and very very tired as T is going through a stage of nightmares again.

 

I have so far lost my home, career and a good deal of my sanity, my relationship has been under tremendous pressure and just about survived, thanks to the lack of support so far recieved, and have a times felt like throwing the towel in completely, but somehow I manage to dust myself off and step once more into the fray!

 

Have you heard of Dreadnought Aspires ... it is a group set up for children like ours in your area ... school, GP, EP, Parent (I think) can refer ... this happens during the day, ask PPS about it I think she knows ...

 

Thinking of you, HHxx

[phasmid]

His college should be able to offer some advice here. I would suggest a phone call to them to see what they can suggest.

[phasmid]

Been having a think about this. Is it one particular part of things that's bothering him? Perhaps the journey - could alternative transport be arranged. Is it something else? A certain teacher or pupil? What I'm trying to do is see if you can isolate a particular cause and then deal with that. Random thoughts...hope they make sense.

[Mother in Need]

Thanks Phasmid and HH, for your support.

 

Phasmid, it isn't really one particular thing, it is school in general that's just too much for him (but not always, surprise surprise I managed to get him to school yesterday and today!!!). He is in mainstream and it is not really suitable, BUT there is no provision for non-learning disabled autistic children in this county at all as far as I know...HH, can you prove me wrong here?

 

A taxi has been requested by solicitor, education welfare officer, SS, CAHMS, the whole lot, but we're still awaiting a reaction from the powers that be...

 

RESPITE does not seem very forthcoming and if it finally does it will certainly not be for more than a few hours at the time due to his other health problems and the need for injections etc; all those health and safety regulations mean that nobody can do anything these days... school mentioned on Monday 'we cannot stop him from running away, we are not allowed to restrain him', they're not allowed to do this, that and the other and it's so frustrating.

 

College only says 'if he is off school for some time we'll have to put some home tuition in place'. I know that's exactly what you desperately need HH, but I have two other children and a business to run and a roof to keep above our heads....as a single mum (I have lost that battle HH) I have needs too but...

sorry, am moaning now.

[phasmid]

As a carer you have the right to ask for an assessment of YOUR needs. This should cover issues such as respite and so on and also cover the needs of your other children. We have used this route as leverage a couple of times to our advantage.

 

If you have already made the request for transport to/from school it sounds like you need to chase them up over it (yes, I know...) and tell them just how bad things are. Tell them (in writing) that he is in danger of becoming a school phobic (current term that rattles their chains somewhat!) due to the stress of getting to and from school. They have a duty to ensure that he arrives at lessons in a fit state to learn (yes, I know...).

 

HTH a little.

[oracle]

I am going to stick my nose in here and hope I do not get it bitten off. I realise that there is more than ASD going on here but is a residential placement out of the question. I know that it is something that most of us would not even like to think about but even though I home ed I know parents who have had no choice but to go this route and have been amazed at how much their children thrive in these placements. You could at least be sure that he was gtting an education to meet his needs and maybe even hold on to your own?

 

Of course I do not know all of the ins and outs here so maybe I should just saying nothing.

 

<'> Carole

[Mother in Need]

Carole, always say something, I for one will never feel upset at someone who is trying to help me!

Residential, the idea does not appeal to myself nor my son I have to say, but how does one know what's the best for him without trying it...

 

Phasmid, Oh yes I know all about those assessments; SS does not. Ahem, I actually mean this, after 8 official requests since the beginning of May (incl from psychiatrist, psychologist, GP etc) to SS for assessments of our needs it took a solicitor threatening them with legal action for them to finally start. However, remarks like oh yes you have a right to work, but you just have to do that while he is at school. Oh no, you don't need respite, you have that while he is at school. Once you get your DLA you can buy in any help that you need. Oh no, home help is only given to elderly people have not given me too much hope. Also, these should have been finalised yesterday and they haven't, so despite those threats they still can't be bothered to stick to their own guidelines.

The needs of my other children certainly haven't been looked at, unless they did that while I blinked?

 

Half term starts on Friday, so will see if that taxi materialises when the term starts again, and if not, I'll do what you suggest; but I'm so tired of all this Phasmid, I don't know if I've got the fight left in me...

 

Sorry, what does HTH stand for?

 

Who's legal duty is it that he arrives at school in the first place, is it the school's, the parent's, the LEA's?

[Kathryn]

Mother in need,

 

I don't have any practical advice to offer but just wanted to say I know how you feel regarding having some respite and a life apart from your son. You aren't being selfish at all. I feel worn out after non stop caring for my daughter for over a year now, with no immediate end in sight.

 

K <'>

[Hectorshouse]

Hi MIN, unfortunately there is very little in the way of provision for non-disabled learning ASD children where you are, but saying that there is one school near Truro Pencallenick that is predominantly ASD ... but I think it may also be MLD as well so it might not be appropriate, ... have you tried to get in touch with xxxxx, they are a charity that specialises in the care/support/education of children and young adults with ASD, even at worst they might be able to offer some help and advice, I managed to get them to come into school to educate ex-SENCO witch woman on the challenging behaviour displayed by children with ASD ... I've got a name and contact details somewhere, but am off to work in a min, late already so will PM you it laters!

 

SS where you are, are desperately under staffed, SW's pretty much only working on cases that are child protection issues, keep hassling them tho I managed to get a referral from them for T to go to xxxxxxxx, but I think you self refer as well. Has PP been able to help? or come up with any suggestions ... she used to be a teacher of children with autism and should know her stuff .. yours is a difficult one, because of the learning ability the LEA will always say he can 'cope' in a m/stream as he has the potential/ability, but his behavioural problems are know seriously impeding this process, home help by the way isn't only available to the elderly, I was able to access a care/support worker who was meant to take T out every w/end to give me a breather and spend time with A ... unfortunately we moved before this started ... also there is the direct payment route, this way you can buy in your own respite, might be worth considering ..

 

Good luck, thinking of you HHxx

[nellie]

HH,

 

I have removed the names of the organisations you mentioned in the above post, it?s forum policy not to name schools, professionals, organisations etc. Sorry if you weren't aware of this, you could PM the details.

 

Mother in Need,

 

This is the NAS resource and information site, a great place for finding out details of schools, organisations and groups etc.

 

http://www.info.autism.org.uk/

 

Nellie xx

[niki]

MIN i send you big hugs it must be hard xx

[phasmid]

Hi MiN,

 

 

HTH = hope that helps.

 

Wish it had! Can only offer <'> <'> Sounds like your having a rough time of things right now.

[Malika]

Hi Mother in Need

 

I feel sorry to read that life is so difficult for you at the moment , I have not read all the thread but seen that you have some advice for Residencial college I would definitly consider it because there are some good provision and it may help him tremendously, the difficult bit is to convince your son and yourself about it mind most college would not be able to take him before next year, you can at least talk to those college yourself and explain the situation , please open this link this is a residential college and it catters for boys they have place at the moment as I talk to them last week for somebody else I am trying to help but may be it is too far even if they take people from all the country. Have a look as well at the whole web site and may be talk to your son he may become interested , I think that most college do require a DX but not a statement the key is to get some cooperation from your son.

 

 

Hope this will help, try as well to communicate with your son about the subject with a bit of time he may himself decide that he needs to study.I know this is easy to say. Bear in mind that my daugther who is 14 and not in very good health found it difficult to feel motivated but at least I know she is in need of another blood test just in case her thyroid gone berzeck again...

 

Take care.

 

Malika.

[nellie]

Malika,

 

It?s forum policy not to name schools, professionals, organisations etc on the forum.

I have removed the link from the above post, I'm sure Mother in Need would be very grateful if you sent her the information by PM.

 

Nellie xx

[BuntyB]

I don't know much about you or your son, but is he able to talk to you when he doesn't have to go to college, or is their communication difficulties?

My daughter is 9 and has been refusing to go to school. I did manage to get her there until last week, when it just became impossible.

 

I told her that she MUST go to school, but we can talk about what we can change at school to make things better. Like you, I work and in the long run, I don't think being at home would be good. I am sure her siblings would want to do the same!

 

We found out there were problems with certain things. I tried talking to staff, who weren't terribly helpful as they were stuck on the national curriculum instead of making allowances for her disability.

 

I ended up speaking to the Local Education authority who are supposed to be supporting her mainstream placement and sent them in to sort out some ideas of how to adapt things. So far, things have been much better.

 

I appreciate what is being said about respite, but what do you do if you get offered it and he refuses to go to that too?

 

He obviously has things which are triggering his anxiety, and it may take some detective work to get to the bottom of it. In the meantime, come and rant at us when it gets tough!

[Malika]

Hi Nellie and Mother in Need

 

Nellie Sorry to have disregarded the rule, just because of my ignorance of it. Could you tell me please where I can find the groupe policy that I may have a good reading and avoid other mistakes in the future. Thanks

 

Mother in Needs I have now posted you a PM. Hope it will help.

 

Malika.

[nellie]

Malika,

 

I?m not surprised you were ignorant of this policy, although it?s mentioned frequently on the board it?s not displayed where members can see it. I shall bring this to the administrator's attention again.

 

This is a link to one of the postings Kris made on this policy.

 

http://www.asd-forum.org.uk/forum/index.ph...t=0entry13271

 

I did PM the link to Mother in Need to make sure she got it.

 

I hope you understand.

 

Nellie xx

[Malika]

Hi Nellie

 

Of course I understand by no mean I would like to go against any rules set up for the board ( what I understand is: this policy is as well to avoid pointing the finger at school we may have disagrement with It is a kind of protection for the children as well not to be identified )

I am so happy that such groupe exist I think it's great and there is such a benefit to participate in it

Thanks to all of you to put such an effort to make it running. I feel very geatful for it all. <'> <'>

 

Malika.

[Mother in Need]

Thanks Malika and Nellie, I will have a look at the link after this reply.

 

A bit of an update, my son has now been accepted into a psychiatric day unit for 4 weeks, in which they will work with him full time and assess more in-depth as to what his needs/abilities/problems etc are.

Which also means he won't be attending school during that time so that gives things more time to settle down and for proper help to be sorted (wishful thinking?). The down side is that he will be 'admitted' some time during the next two months, so there is still the meanwhile...

 

Though my son is very verbal, yes he does have communication difficulties but on a more subtle level, like inability to recognise his own needs or to express them appropriately when he does recognise them, or problems with two-way communication, his thinking os on a very narrow beam only and will not accept anything outside of that etc etc etc.

 

Respite indeed will need to be introduced very slowly, and will need to start with someone here in the house working alongside me to get him used to another person caring for him etc. I don't envisage him staying anywhere overnight, but if someone spends time with him here I should be able to take a shower (oh blessed water!) and spend time with my other two.

[Guest hallyscomet]

Dear MIN

 

You are not alone there are a lot of mums going through exactly what you are going through. I am also.

 

Can I just get the age of your child before I make any suggestions, that have helped me

 

Take a deep breath...

 

 

Hailey

[nellie]

Mother in Need,

 

I have sent you a personal message. Just to add...... whilst waiting for my son to go residential he had ASD trained support workers working with him every day and taking him out. It was successful because he knew they understood him.

It made it a very good transition before leaving home.

 

Nellie <'>

[Mother in Need]

hallyscomet, my son is 12.

[Malika]

Hi mother in need

I though he was younger yes may be a bit young to consider residential but if u get a proper assesment of his needs may be there are good prospects. To find day time care only.

 

Hope this will be sorted, will send u another PM today..

 

Take care.

 

Malika.

[nellie]

Mother in Need,

 

Respite indeed will need to be introduced very slowly, and will need to start with someone here in the house working alongside me to get him used to another person caring for him etc. I don't envisage him staying anywhere overnight, but if someone spends time with him here I should be able to take a shower (oh blessed water!) and spend time with my other two.

 

 

I think it's crucial that this someone has ASD specific training.

The organisation I mentioned in my PM would be able to assess and provide this service. Good luck.

 

Nellie <'> <'>

[Guest hallyscomet]

Hi MIN,

I have sent you a PM

 

Regards

Hailey

[Guest hallyscomet]

Hello MIN

Your post read

(have always had problems getting my son to college, but this has now become total refusal to go, he jumps the bus, or sits on the stairs holding on to the banisters while screaming and won't be budged, and I am afraid this is a battle he has now won as it is just taking too much out of me (and him!) and I feel I should not push him to go somewhere that is too hard for him to be.)

 

Response: My son went off the rails at 12 it is very common for children like our to hit a wall at this age and needs to go back to the Specialist for reassessment of medication as in my sons case it stopped working. Once the medication was changed he was a good as gold again.

 

Hope this helps. He said his brain felt unwired and had no mental energy to communicate, once an different med was introduced it was like the loose wire was reconnected. My son told me how much better he felt, and it was much easier for him to connect with people. he just wanted to run away from it before this. The doctor prescribed Risperdal, this is now being used in the US and many countries to treat Autism and Autism Spectrum disorders.

 

One they reach puberty things change. He has had no side effects and is a happy little (big) chappy..

[Mother in Need]

Hallyscomet, thanks for your PM and message here, my apologies for not responding sooner, life has been a bit hectic/mad/difficult etc and I've been without computer also and have felt so cut off without this forum!!!!

 

Things are looking a bit brighter, he is enjoying it very much in the Psychiatric Day Unit, only 6 children in total, a nd more adults than that who all understand him. Bliss! He has been so much better generally, except since yesterday and all the snow that we've had this has really had a great negative impact on him, not sure why. Can't write more now, can't keep my eyes open, so good night!

[curra]

Hi,

just read your last post and the thread from a month ago, I'd like you to know that you have my thoughts and support. I'm also a lone parent and my son is 12 too, also refusing to go to school. It is very hard. The psychiatrist did not want to see him although he was referred by the GP. He's getting counselling instead.

 

It's a very good thing that your son is receiving psychiatric help. I hope that things look brighter for you and your son very soon . <'>

 

 

Gloria

[Mother in Need]

Thanks, Gloria.

 

Had problems again this morning, due to all the snow and ice over the last weekend he does not feel safe travelling and I once again could not get him in the taxi to the Day Unit, even though he likes the place, once he is upset there jsut is no reasoning with him whatsoever, he was so afraid of the raod conditions and of having an accident (which he has never had) and after 45 minutes in the freezing cold trying to convince him to get in I gave up. My toes are still hurting 2 hours later now... anyway, it means that once again he's with me and appointments have had to be cancelled. And I wqas so looking forward to a nice warm bath...

Sorry to moan, I know that so many of us go through this every day, it just sometimes gets a bit much.

[lynyona]

mother in need.

 

I know exactly where you are coming from, i think we suffer from me moments or the lack of them.Kiearan is 19 now and since leaving school is home 24/7 When he left school we did try college but he really hated it and it was such an horrible experience for him i decided not to subject him to something that caused him so much distress(he doesnt do crowds and new situations well)HE was dx at nearly 18 and the first thing the clinical psych wanted to do was get him out there so we tried college again deviously may i add(still feel guilty about it) I just took him and left him with one of the tutors and hoped he was going to enjoy it that much he want to carry on going as he knew lads from his school there.While he said he enjoyed it when i picked him up when he got home he said that he wasnt going ever again and he didnt, but i did him no favours by taking him as now everytime i suddenly say we are going somewhere he gets very paranoid about it.Hopefully with your son being younger they can sort it out as after 18 the help is few and far between as we have found out. The only time kieran leaves the house is when he gets his income support every two weeks and we go into town and it is on his terms we only go where he wants to go we cant deviate anywhere else and preferably in our car and not on the bus. lynn