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PDA in a mainstream school?

(29 Posts)
CurrerBell Thu 25-Sep-14 10:27:23

Having a wobble today and would really appreciate someone to talk to...

Just to give some background... sorry if this is long!

My DS has just turned 8 and has started Junior school. He has a diagnosis of Asperger's with PDA (he is very demand avoidant). He is academically bright but will not engage with lessons, and needs adult support for every transition, from the time he arrives at school to the handover to me at the end. He hides under the desk and needs adult support to coax him out (amongst many other frequent, daily occurrences).

At his previous school (Infants) things weren't handled very well and he started having violent meltdowns / panic attacks. He was excluded from school twice and ended up on half days for the last few weeks of term (thus avoiding possible permanent exclusion).

He is currently undergoing statutory assessment (after months of us fighting to get this far). In lieu of the statement the LA granted emergency funding to enable DS to make the transition to Juniors. School have been able to provide full-time 1:1 support and he has had a positive start there. Even with a 1:1 things are not easy, and there have been incidents but these have been handled well by the school. I really want him to stay at this school as they are going to start him on a programme of emotional/social education and they are generally being very supportive.

However, I'm hyper aware that it could take just one big/violent incident and we would end up with the cycle of exclusions again, and with DS in crisis.

The LA SEN Team rang the SENCO yesterday for school's input into the statutory assessment. The case officer then tried to tell the SENCO that DS is "high functioning"... The SENCO said that is irrelevant - he has PDA, and if you want DS to learn you have to be with him all the time. The SENCO has now written a letter detailing just how much support DS needs, and saying the consequence of him not having this support could be permanent exclusion.

I know the SENCO had to say this to the LA but it's upsetting and has really knocked me back. I know this would be a very real possibility if DS doesn't get the support he needs. I am terrified that the statement with come back as a NIL or not have enough hours specified. After all we've told them, it seems the LA are still not joining up the dots!

Plus, even if the statement comes back with full-time 1:1, I know school is still going to be a struggle for DS. Special school doesn't seem to be an option given his academic levels, and also the fact he probably wouldn't get a 1:1 there, due to the smaller class sizes? It is all churning round in my head so any words of advice would be very welcome.

fairgame Thu 25-Sep-14 11:10:08

flowers
My DS has ASD, with acute sensory needs and possibly some PDA traits but it's difficult to tell.
He had full time 1:1 for 5 years in ms and was excluded every year. He was at risk of permanent exclusion for the last year of his time in ms. Although this was horrible to hear, it was simply because ms was not for him. The school had tried everything, and i mean everything, to try and meet his needs but it just wasn't working.
DS has no learning difficulties so couldn't go to a state ss. He is now in an independent specialist school which specialises in autism and is has a specialist PDA assessement centre attached.
You are right that children don't usually get 1 to 1 in ss because of the smaller class sizes, however in an independent ss they may get 1:1. Ds more or less gets 1:1 in his school as there are 4 children in the class and they all have a keyworker plus the class teacher.
I think it might be a good idea to see if there are any independent ss within an hour travelling distance of you as this may be a good option for your DS.
Unfortunately when your child has SN sometimes you hear so much negativity about them and it's very disheartening. However if people just focus on positives then it makes it look like things are going ok, which is no good when it's the negative stuff that will result in them getting the help they need. That's how i see it anyway.
If the statement comes back as inadequate then appeal. Loads of us on here have been through appeals and have loads of experience and advice to help you. Your definitely not alone smile

CurrerBell Thu 25-Sep-14 17:35:56

Thanks fairgame. I really appreciate your reply, and I'm so glad it worked out for your son in the end. flowers

I don't know of any independent special schools nearby (are independent school where you have to pay, like private?), but I'll look into it. I have no idea how I'd get my two children to two different schools though...

I called the case officer today and asked about the timescales. They've got most of the reports in now. I also asked whether they needed any extra info on PDA, as this is the really significant part of his difficulties at school. She then told me that the paediatrician had not mentioned PDA in his advice to them! The diagnosis given by the paed (not the one who originally diagnosed him) was just Austism Spectrum Condition. FFS! How hard did I work for the PDA diagnosis?! I had included the original diagnosis letter in the paperwork for statutory assessment, but they can't use that apparently... it has to come directly from the paed. So I'm chasing him up again now before the deadline...

A few professionals have doubted DS's PDA diagnosis (or not believed PDA exists). But his new school have completely taken it onboard, and are using all the strategies to very positive effect. He is a Jekyll and Hyde from one moment to the next - there is no consistency and he will change without any warning, so he needs support all the time. He tried to cut his own finger with scissors yesterday (at school) and went to bang his head against a wall today to make a bump. Yet he came out of school in a great mood and was chatty and helpful on the way home?!

If I have to appeal the statement, won't that take months? I don't know how much longer school's emergency funding will last...

fairgame Thu 25-Sep-14 17:54:18

My appeal took 8 months from when I received the letter giving me the right to appeal.
PDA is not diagnosed at all where I live and unfortunately some 'professionals' do question whether it exists but if you have an ASD diagnosis and look for an ASD specific school they will usually be able to use pda techniques.
If you want an independent special school then you would be looking for the LA to fund the place. Many don't like doing it because it's expensive so you have to be prepared to go all the way. My son got his placement because I was able to prove that no other school could meet his needs. Ms couldn't cope with him and a state ss had no peer group for him plus they were only for kids with learning difficulties. If you prove that the independent special school is the only option then you can get funding for transport as well.
Ds's placement costs £41k per year and he gets a taxi with an escort as well. His school is an hour away.
Ms and state ss don't usually have the experience with pda, although it might be different in other areas but it's crap round here!
The only other option is ms with full time 1:1 which the LA would probably agrer to as it's cheaper.
I'm not saying you should put your child in ss btw I'm just saying to lool at all of your options before you decide what to name if the issue a statement. If I had known about independent ss when DS was younger it would have saved me a lot of hassle!

lattemum Thu 25-Sep-14 21:20:00

Can't believe your story - you could have been talking about our DS aged 9. He has recently got a Statement (after several exclusions and emergency funding too!) and PDA has been accepted by LA but we are going through the same worries about secondary school as you. Our DS is like a different child since he has been taking a small dose of Prozac daily - I wonder if you have considered this? He is happy and engaging in his schoolwork like never before and our family life has improved no end. Just hoping it lasts!

PolterGoose Thu 25-Sep-14 21:35:58

Message withdrawn at poster's request.

ouryve Thu 25-Sep-14 22:16:19

DS1 is very similar. ASD and ADHD with very much PDA traits and a lot of sensory difficulties with a mainstream classroom. He started reception with a statement, as school were on the ball about initiating SA as soon as they had enough info from his time in the attached nursery.

Nevertheless, he lurched from crisis to crisis and every single school year involved a settling in period that lasted until Easter. Year 3 was particularly problematic for him, as it's a small but growing school and classes were re-organised several times, that year, (new housing estate built) until a configuration that worked was settled on and his class ended up with a teacher he didn't much relate to in a small classroom, so he never did settle, that year.

So, by the time of his annual review in year 4, school agreed with me that they were struggling to meet his needs. He was doing his best ever, at that point, thanks to more stability and a class teacher who got quite expensive wine, at the end of the summer term, just for being so fab with him, but he was still heavily reliant on a 1:1 who couldn't keep up with him, mathematically.

So, a year later, after the usual dance with the LA and a build up to tribunal (they pulled out, thankfully) he started at a very small specialist school for boys with SEBD - mostly anxiety related to ASD/AS/ADHD. Being the end of the summer, his primary class was up to 6, but now everyone's moved up and he's in year 6, there's 4 of them in the class. No 1:1 but he has a key worker and there's almost always TAs in the class or on hand in case a child needs to work alone for any reason (this happened on Monday - DS1 was anxious about something which was expressed as some very defiant, cheeky behaviour and a degree of mania - CT took him out and left the calmer boys with the TAs for a little while). The amount of time and effort put into pastoral support is immense and the small class sizes free up the time table for a good proportion of practical and outdoor education, alongside the academic stuff.

ouryve Thu 25-Sep-14 22:18:19

DS1 only managed not to be excluded from his MS primary because the HT is strongly against it, btw. In her words, why send a kid home to play on their playstation? What is that going to teach them about how they need to behave?

ouryve Thu 25-Sep-14 22:25:41

And similar to fairgame, here - no NHS professionals dealing with DS1 use PDA as a diagnosis, his CAMHS psych says it's disputed by many, so describes his ASD as atypical. He didn't shy away from pointing out the possibilities if DS1 became completely disaffected at school, in his supporting letter for appeal, though and was keen, going back a long way, that we looked outside our LA for a placement in time for secondary, as he knew of nowhere in the LA that would be suitable for him.

CurrerBell Fri 26-Sep-14 15:08:55

Thanks all. I spoke to IPSEA a couple of months ago and they said I could contest the previous exclusions, but there seemed little point to me as he was about to leave the school. I still have to deal with the school as my daughter is there. Unfortunately the HT was not against exclusions as she wanted to "send a message"... DS needed to know that we (the parents) strongly disapproved of his behaviour. I just cuddled my boy tight in those meetings. DS was already refusing school due to anxiety and it took all my energy to get him in in the mornings. So how on earth he was meant to learn from exclusions I have no idea.

I have had no issues about how his current school are handling things - they have been positive and welcoming. They have taken the PDA stuff fully on-board and found that it works - BUT they've found that to administer these strategies it takes a full-time 1:1 as well as all staff working together.

I don't know if I'm meant to put location on here, but we are in Bath & North East Somerset. There are two special schools half an hour away, but very over-subscribed and more for kids with learning difficulties I think. I don't know about independents. We moved to be next to an outstanding secondary school (mainstream) but it looks like DS probably won't make it there. sad

I might consider talking to the paediatrician about some kind of medication. DS is just so anxious and his mood swings are so extreme.

Having a wobble but not giving up... flowers for all of you in a similar situation.

Jacksterbear Fri 26-Sep-14 18:21:58

I have no answers but lots of sympathy, and am following this thread with interest. I have a 7yo DS, also in y3 in MS school, with dxes of ASD with a PDA profile, SPD, and anxiety. He is currently on half days as not coping at school. He has been on the verge of exclusion on safety grounds several times (most recent incidents have included flinging himself at a glass door trying to get out of school, and smashing his head repeatedly into walls and cupboards while in meltdown). School seem at a bit of a loss and I'm not sure where we go from here!

thanks brew cake for those struggling.

CurrerBell Tue 30-Sep-14 17:46:17

Hi Jacksterbear, I meant to say thanks for your reply. Sorry to hear that your DS is going through it too. flowers It is the worst thing seeing them struggling like that. Does he have a statement?

I am re-writing my parental views towards statutory assessment and it's all about the PDA side of things! I need to get PDA on his statement.

I am also considering becoming a parent governor as there is a vacancy... I wonder if it might make a difference to be more involved with the school and give something back... although it might be a terrible idea?! I wonder what would happen if a governor's child is excluded?

Jacksterbear Wed 01-Oct-14 09:57:06

Thanks currer. No statement. School have always fobbed us off whenever I've mentioned it. They say he already gets more support than any of their statemented children. Have previously not wanted to damage our relationship with school so not wanted to apply without their support. But rapidly losing faith now as things are going so badly. Have started looking into other school options for him.

Ineedmorepatience Wed 01-Oct-14 10:43:22

Hi currer my Dd3 has Asd and struggles with anxiety. We went to tribunal thi year because the LA refused to assess her even though she was at breaking point and was often unable to attend school due to her anxiety.

We found that the tribunal panel did take notice of the evidence we provided! It is nonsense that your LA are telling you that they dont have to take note of the information from the second Paed!! They should take account of all reports that are included as part of the statutory assessment and that includes ones that you send in.

Be prepared to appeal this if they try to fob you off, if your senco is supporting you you will win!!!

CurrerBell Wed 01-Oct-14 14:44:36

Jacksterbear, wow that is a shocking attitude from your DS's school. I can't understand why they wouldn't want a statement for him?! Although I guess right now they are getting away with the half days, but if he had a statement they would have to support him properly...?

The thing I wish I'd done differently is apply for the statement myself and not waited for the school, so I could have been in control of the process. Also I would recommend getting an independent ed psych - I wish I had, rather than waiting around for the guy the LA sent in (grrrr).

Have you spoken to IPSEA? They are very helpful.

Ineedmorepatience that sounds very hopeful then that my evidence should count. I am going to send in the diagnosis letter again as they said they need all the paperwork afresh since statutory assessment was granted... what a stupid system!

Ineedmorepatience Wed 01-Oct-14 16:48:19

You are right, it is a stupid system!!

You never know the new system may at least be abit more family and child friendly!!

Good luck smile

CurrerBell Tue 07-Oct-14 11:48:57

Hmm things are starting to go wrong.

DS has been throwing Lego and kicking out - his TA got in the way trying to calm him down and got kicked (they know it wasn't intentional on DS's part).

They haven't excluded DS but they say they can't have him there if his behaviour endangers other children or staff. He's doing things like lying full length on the floor across the entrance to the assembly hall when the children are coming in for assembly, and refusing to move, or swinging a rope round in the playground oblivious to other children getting hurt.

I wanted him to stay in mainstream (with 1:1) as he's a bright boy, and they say he does have the potential to do well in several subjects - but his PDA is preventing him from learning. He gets upset because science is not "proper science" and he has to follow the teacher's schedule. He is in the top set for maths but won't always go in the classroom so ends up working separately with his TA in another room.

They said they have the choice of getting DS through the day safely or pushing him to learn, but at the moment he can't do both.

Although the SENCO has been very supportive, there are a couple of things she said which have made me feel like she's preparing me for the worst. She said they are concerned about DS's behaviour setting an example for the other children, and they also have to consider what Ofsted would think if they come in and see DS not working, etc.

We should hear about the statement within the next couple of weeks, but even if he gets it, I don't really know where we can go from here. DS's demand avoidance is going to be a big issue whatever setting he is in.

(Sorry for the glum post - feeling very low today.)

Jacksterbear Tue 07-Oct-14 12:03:27

Oh God, I could have written that post, currer. We are in almost the exact same situation, with the exact same comments and approach coming from school. I have no wise words but plenty of hugs for you. thanks

PolterGoose Tue 07-Oct-14 12:09:40

Message withdrawn at poster's request.

CurrerBell Tue 07-Oct-14 13:19:35

Thanks both. flowers I'm back to wondering if it would be easier to home educate than deal with the stress of school. sad

CurrerBell Wed 08-Oct-14 10:15:22

Just wondering - could anyone recommend an independent ed psych who understands PDA, in the South West? TIA.

CurrerBell Wed 08-Oct-14 17:13:18

Thanks for the PMs... I have found someone who can help. flowers

CurrerBell Sat 13-Dec-14 11:31:49

I am just resurrecting this thread with an update... it seems we have reached the end of the road with DS's mainstream school. He has had to be restrained by trained teachers/TAs on several occasions (this is related to being asked to finish using the computer, and him refusing and getting upset). They say he poses too much of a safety risk to be in the school.

He is only doing 3 hours per day at the moment on a reduced timetable, and now we've had a letter where they are talking about further exclusion.

He still doesn't have a final statement (it has been held up by his current school saying they can't meet his needs). However all the LA's schools are full and unsuitable to his needs.

The independent ed psych concluded that he needs a very small and nurturing specialist setting, where he can meet his academic potential (she assessed him as 'gifted and talented' in certain areas, although he is not able to access much learning at all at the moment).

We wanted to move him to a small ASD resource unit (attached to a mainstream primary) - but it is completely full until September. We have found an independent school (which caters for high functioning ASD) which has spaces now, and have asked the LA to consider this, although I am not hopeful that they'll agree.

We have his first CAMHS appointment next week and I think I'm going to ask for him to be signed off school with anxiety (for the next week at least) to give us all a break. I know this is giving the school/LA what they want, but I'm not sure what else to do right now for DS's wellbeing. sad

OneInEight Sat 13-Dec-14 16:37:01

Sorry to hear you are still struggling to get support. In not dissimilar circumstances we used the argument that ds2 was entitled to a full-time education which they were not providing. We did have to go to a formal complaint but it did get things moving. ds2 had been on a reduced timetable for about a term and the school and we just could not see a way they could get him back to full time (he was in an ARP at this stage). He is doing much better at his specialist school now although it has taken a while for him to settle in and his anxiety to go down.

pannetone Sat 13-Dec-14 17:25:03

Sorry things are so difficult Currer - we ended up getting both my DS and DD (HFA) 'signed off' with anxiety as school became too much for them to cope with. DD was already being assessed for a statement and the fact that she wasn't in school added weight to the argument that she needed a specialist setting and we got this in October. And she is doing really well in this small independent specialist setting (7 in her class, 22 in the school!) and learning again.

With DS the fact that he was out of school probably helped our request for him to be assessed for a statement. He is now Y8 and also needs a specialist setting (DD's school is only primary) but the LA haven't agreed to this yet...

Slight thread hijack - OneInEight I want (!) to make a complaint about the LA's failure to provide DS with a full time education (he has been out of school now for almost a year, he didn't get any home tuition for the first 6 months, the LA have refused to pay for internet school, and in his final statement have only put MS school, without naming one). Who do I complain to?

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