Please or to access all these features

SN children

Here are some suggested organisations that offer expert advice on special needs.

Can someone possibly think what my next step would be?

21 replies

DCSsunhill · 11/06/2012 20:42

Evening all. I've had some lovely support from this board previously and was wondering if anyone could help me think clearly about my situation with DS1.

Background....

I first posted on Mumsnet in 2005 when DS was 3. He was not reacting to discipline or praise like I would have expected him to. Play school struggled with him as he did not want to take part and constantly wandered away from the group. He struggled with friendships and often hurt children who were friendly to him. We moved to Australia and he continued in Kinder, again with the teacher stating that he was a little different to other children but no huge issues.

At the age of 5, DS1 was excluded from his infant school in Australia. We lived in a remote village and the school just had no idea how to cope with his uniqueness. By this age he had developed obsessions...at this time it was Dr Who and he had one outfit that he thought was like the Doctor's that he would wear constantly, would never let me wash it. The overcoat was actually his manly dressing gown and he had now idea that his school friends were ridiculing him....he thought he looked amazing. Over the past few years the obsessions have been Michael Jackson, magic and now scary tricks. Anything he can study, get his teeth into and practice over and over...they really take over his life then poof...like a flash of smoke he has no interest in them anymore.

At the time of his exclusion we had already planned to return to the UK. He started infant school here and all was ok, they tolerated his behaviour (not listening in class, no friends, acting class clown to entice friendships).

Behaviour at home deteriorated rapidly. He focused his obsessive behaviour on his brother who literally wasn't allowed to breathe, eat or talk within DS1's presence. If he did, he was punched. Same for me too...I often showed school the bruises on my arms as a way of documenting what was going on at home. His obsessive behaviour then quickly manifested into a touching routine, having to touch each object he passed four times, on each corner. this was so intrusive and even made him weep with frustration, eventually asking me to do the touching for him as he couldn't control his compulsions. DS is now 9.

We were referred to CAMHS in Feb 2009, seen in Sept 2009, ADOS June 2010, and given a wishy diagnosis of sensitivity disorder. No ASD at all, allegedly. I have beaten schools door down asking for help, as it is clear that something is not right. They did a CAF but the only agency on it was speech and language which said they had no reason to work with him. I met with the behaviour specialist from the local secondary school who suggested I bought him a tv for his room and let him eat his meals in there, so that we don't disturb him. I ask for meetings with the head on a regular basis but she is not responsive...it is a local school with a lot of pupils on child protection plans so her focus is elsewhere. He is in a class with 3 teachers, one mon and Tues, one we'd and Thurs and one Friday. He hates this.

He was referred for OT of which he has had two in school visits, the second of which the OT expressed her delight in how well he'd behaved during Mathletics. I then glumly informed her that yesterday, during Mathletics, he had sand for the whole lesson and written a poem about MJ. Noone talks to each other, I feel I am the only one holding this all together.

I don't know what my next step is. We have been re referred to CAMHs but the initial appt is not until Oct FFS. Have an appointment with Daphne keen in August as I am convinced that someone has missed a trick somewhere.

No matt how many times I ask the school for support, I get nothing. I simply get called in weekly to be told how much DS1 has misbehaved and disrupted the class, and given punishments for him to complete at home. Today, my child minder collected him from school and got called in by the head teacher who then informed my fucking childcarer all about DS's bad behaviour and his punishment. I am so cross about this...they know I work full time and i'm never out of school activities anyway so why they had to share details with the child minder I have no idea.

I am considering another school, simply as I feel DS is now hitting a brick wall and has zero motivation. School is also not forthcoming with any ideas of what we can do to help him. He is not achieving, constantly in trouble and miserable.

So sorry for the long post, never intended for it to be so long and yet I have missed out most of the gory details! Does anyone have any ideas of wha my next step could be? Have been trying to source ABA tutor but nothing available in this area at all.

OP posts:
DCSsunhill · 11/06/2012 20:47

Typos sorry...it should be manky dressing gown, not manly. And he sang through the lesson, not sand.

Reading it back I don't think I have managed to get across the depth of it all. DS1 controls our lives yet gives nothing back in return. We are bound by his routines and obsessions, it means we have to change literally the way we pronounce words in order not to get punched. He will talk with such rudeness and disrespect and call me names that no mother should ever be called. He just laughs when I show upset, there is no ounce of empathy or understanding.

Zero eye contact also, which makes it very hard to have proper one to one conversations.

OP posts:
bialystockandbloom · 11/06/2012 20:58

You poor things, it sounds to me like you have been seriously given the run-around and let down. Makes me so angry to hear stories like this when a child is so obviously in need of help and support Angry

Anyway. I would be looking for other schools. In the meantime ask for a meeting with HT, SENCO, and CT. Write down all his difficulties/behaviours and how seriously this is affecting his wellbeing and everyday life. Present them with the list. At the very very least he should be on School action and have an IEP - if not SA+ or even a statement.

Also go to GP and ask for a referral to developmental paed/equivalent service (not sure if this would be exactly this for a 9yo). CAHMS afaik cannot diagnose.

Re ABA (great idea btw!) - where are you based? There are consultants who work across the UK, and it should be possible to find someone who can become a tutor for you.

bialystockandbloom · 11/06/2012 21:00

Oh and great that you've got an appt with DAphne Keen. I know it's a bit of a wait, but there's only this half-term to get through, then the appt isn't too long after the new term. In the meantime you can still do things to help him directly (ABA etc).

zzzzz · 11/06/2012 21:03

This reply has been deleted

Message withdrawn at poster's request.

DCSsunhill · 11/06/2012 21:06

Oh hello Bialystock. Thank you so much for responding.

I am so lonely in this process, I feel as I have no one to help me fight my corner. The school SENCO is DS2's class teacher. She has been off loads recently due to illness. DS1's THREE class teachers really don't like him. I'm not sure why. He is so clever, very creative and once starts a project he will obsessively finish it in perfect detail. I don't think they care for me either as I am a social work student who has worked in family services for years....I know who to ask and what to ask for but nothing is given or offered.

That's why I could cry on days like today when he's been utterly bollocked. His name was written on the blackboard and ticked every time he misbehaved....his name was covered in ticks by the end of the day. I'm not sure why they think that I can fix or discipline this behaviour...I can't!!! Not until I know what's flipping causing it.

GP has re referred to CAHMS but I am going privately for dx.

OP posts:
DCSsunhill · 11/06/2012 21:13

Zzzz...in answer to your questions:

Average academically. He could do so much better but will not respond in lessons and spends whole day getting punished.
No friends. He has never, ever been invited to a birthday party.
Interacts really well socially with adults and prefers their company. However, he acts negatively to any adult perceived to be in charge of him.
He is an excellent swimmer but cannot catch, run, or throw. He could trip
Over a pin on the floor. Flat footed.

Nothing makes him miserable, he rarely shows any emotion aoart from disgust, hatred and aggression. However, one on one, he is a different child. He is communicative, responsive and you can reason with him. He only gets upset when he feels that something has really gone wrong for him and he is missing out. He cries about once a year.

His brother who is 7 isn't really coping, just getting by like I am. Ia have created a safe space in my bedroom where DS2 can hide away and watch tv / play woo if the bullying and torment gets too much. W cannot sit in the same room for longer than 30 secs without DS1 constantly repeating DS2's name. DS1 is physically unable to tear his gaze away from DS2, it is as if he is compelled to look at him.

OP posts:
DCSsunhill · 11/06/2012 21:14

Sigh...woo equals wii. Stupid auto correct.

OP posts:
HotheadPaisan · 11/06/2012 21:14

This reply has been deleted

Message withdrawn at poster's request.

DCSsunhill · 11/06/2012 21:15

We are in Stockport....I have tried every ABA tutor in the book and nothing going.

OP posts:
DCSsunhill · 11/06/2012 21:17

Yes Hothead, Lenin has previously copied some text from Schramm for me and I found myself nodding in agreement when reading it.

I think I need to dig deeper into my pocket and buy a copy.

OP posts:
HotheadPaisan · 11/06/2012 21:23

This reply has been deleted

Message withdrawn at poster's request.

DCSsunhill · 11/06/2012 21:33

Am single parent, but both DSs have hobbies on at different times, which let's me see each of them separately. I spend 12 hours a week quality time with DS1 which is lovely as he responds so well.

What do you think about school....do you think i've hit a wall? Would it be worthwhile ging to a different school in area? There is a local one with a great reputation for working with challenging children. I was concerned about having to children at two different schools bute it might actually give Ds2 time out from his older brother.

Or might this be damaging in some way. Am in the mood to crawl under my duvet and not come out until next summer.

OP posts:
HotheadPaisan · 11/06/2012 21:41

This reply has been deleted

Message withdrawn at poster's request.

DCSsunhill · 11/06/2012 21:48

I have just ordered the Schramm book. Can't wait til it comes. Just another one to add to my Uni reading list...Will check out the link on yours now.

I had already ordered him a sex book and puberty book last night as he has been talking rather inappropriately about sex at school and with his younger brother.

Thanks for your opinion on schools...wasn't sure if it was a knee jerk reaction on my part but I am just too tired to keep on at them and i'm also convinced that they see me as a total head case who interferes all the time, which I will as he is my son and I love him.

OP posts:
HotheadPaisan · 11/06/2012 21:54

This reply has been deleted

Message withdrawn at poster's request.

AgnesDiPesto · 11/06/2012 23:32

How about Autism Partnership in Wilmslow? Would they cover Stockport? We use their Leeds office. Expensive but a more able child may not need much input - i.e. it may be more about getting behaviour etc under control, social skills coaching and skilling up a school than actually needing lots of tutor time.
Yes I would look for a new school too.
Will your GP refer you for a second opinion to a tertiary centre for ASD? e.g. Lorna Wing / Great Ormond Street / Elizabeth Newsom which will diagnose more complex cases (or simply where local NHS got it wrong).
Get the school to assess his social skills using the P scales or Pivats - this will show that even though ok academically there is big delay on social / emotional front. If they won't then just do it yourself and put it in your file of evidence. That way you can show lack of progress in at least one area and they can't keep fobbing you off by saying progress is fine.

Paribus · 11/06/2012 23:51

I would google PDA and start private assessments- wait for DK, meanwhile, may be find someone else to help you get dx while you wait?
This blog writes about boy with PDA- may be it will be useful for u- alexcparsons.wordpress.com/

DCSsunhill · 12/06/2012 05:50

Agnes, have just emailed Wilmslow right now. I'm not sure hoe they have never come up in my countless Google searches for ABA...believe me, I had contacted almost every tutor in the land! I hope they call me today.

That is also a great suggestion about the p scaling.

Paribus, thanks for the link. Will eradicate that at work today. Couldn't sleep. I feel as though I am the only person trying to find solutions. Poor DS's father has reduced contact with him as his girlfriend cannot deal with his behaviour. DS is not aware of this as yet. It is such an isolating experience...yet everyone is so quick to judge if the behaviour is disruptive. Bah humbug.

OP posts:
HotheadPaisan · 12/06/2012 09:51

This reply has been deleted

Message withdrawn at poster's request.

bassingtonffrench · 12/06/2012 12:17

DS' father should not be reducing contact. priority should be DCs not the girlfriend! Is there any way he can have them separately rather than together to give DS2 a break? girlfriend does not need to be present when DS1 is visitng?

Sorry no advice, but if you a being hit it seems important to maintain contact to give you a break at least.

I was advice re. ABA to go to local University psychology department and advertise via poster for students looking to go into ABA type stuff and looking for experience? I didn't do it in the end because it sounded a bit dodgy but Manchester might be good for you? My DS also responds well to 121 with adults and it helps if they are young and pretty Wink

sorry no thoughts on school.

bialystockandbloom · 12/06/2012 18:16

Autism Partnership, or another provider, will provide the overall consultancy and ongoing supervision but may not necessarily provide tutors (though I think Peach do) - you'll prob still have to recruit these yourselves. We found ours through Gumtree (advertise in Education/Special Needs section), the VB community website here or the ABA Yahoo group (you have to join). We've also heard of people recruiting psychology students - see if there's a notice board in the dept at nearest university and ask if you can put a notice up (I'd be v careful not to give any details other than impersonal email address).

New posts on this thread. Refresh page