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Help : placement has failed any recommendations for pda residential?
  • Weary
    Posts: 17
    Hello,
    Firstly what a wonderful resource this forum is. At my lowest ebb, as parent to pda 13yr old (yr 8) Son, it really does provide comfort & reassurance that we're not alone in trying to pick our way across this minefield. I discovered this site & Nevilles 4 films on pda were so valuable particularly in helping the 2 older siblings get a handle on pda. Karen Wichellos training was invaluable at the beginning when we were struggling to understand & accept. I am wondering if any one can offer us some advice out there? And I'll try and provide the background as briefly as I can...Our Son managed state mainstream primary school, with pda traits only really significantly emerging in the last year of primary, yr 6 - the transition year! Secondary transition began to break down within days of the first term & he was sent by his school to an alternative provision. We quickly realised this was only going to be temporary a 'holding' facility as no knowledge or motivation to engage with pda was evident. Meanwhile my dear Husband gave up his job and is still Our sons primary carer. I am hanging on to my job by a thread. Husband began to work solidly on getting an EHCP within 14 months. The alternative provision broke down within weeks (only behavioural strategies employed) and so from then on and the rest of year 7 our son was out of education and orbiting our home 24/7. Socially isolated and going mad as well as almost sending the rest of us the same way. Husband managed to get the EHCP within a year, an incredible feat, with "weekly residential", therapeutic support' and "pda traits" included on it. We have no formal diagnosis of pda only recently an ODD diagnosis (because of the postcode lottery) diagnosed by the complex neuro developmental psych team in our London borough who refuse to diagnose pda or refer us on for assessment. It's the usual "it's not included within DSM diagnostic manual etc etc "However, informally they did agree with us that our sons profile does appear to display "pda traits" so we accepted the ODD diagnosis (grrr) and they included these pda comments in their report. Around the same time CAMHS gave us a diagnosis of ADHD (no problem getting that one)! And some 'Concerta' meds that did not suit him at all so were stopped a month later (massive mood swings and significant lows, increase in aggression, really poor sleep). After securing the EHCP and having looked extensively at schools we felt we'd found the school that seemed able to meet his needs & who said they worked with pda children. A weekly residential underpinned with therapeutic input and a therapy unit every child starts in. He started at the school & for 6 weeks until Xmas hols the transition seemed to be manageable for him ... hurrah ! success at last ! we thought. We can breathe again. How wrong we were. Briefly, last day of Xmas term husband was phoned by school to say son was being moved out of the therapeutic units supervision & into the schools supervision in January but no therapeutic input was discussed or offered. I was shocked as it felt too early to be moving him out. We expressed this pointing out he had only been at the school a very short time probably masking & to be moved full time into school from the nurturing therapy unit could be difficult. We had pointed out when he started that he would likely "mask his anxiety extraordinarily" for several weeks and to watch out for the anxiety & subsequent control that would inevitably start leaking out. At all times we were certainly not know-it-all parents - we just knew our child & a bit about pda.
    They agreed to take him back under the therapeutic unit and he went back after 3 week Xmas hols believing it would be familiar. However, I do think transitioning back into the family unit was hard for him and then back to school again so whether this was a factor or not his behaviour over the hols began to really deteriorate. Aggression increased and some violent outbursts emerged. Possibly the potent mix of pda & puberty? The start of term came and off he went with us all understanding he would continue under the supervision of the therapeutic unit and still accessing school but under them. We all breathed again. For a day. What followed for 4 weeks were multiple exclusions for aggression and a violent outburst. I should add that in my job I have a full understanding & appreciation of safeguarding self & others so I get that and their concerns. But multiple exclusions for the incidents didn't really address anything at all. I wonder if they made it worse? The schools response to this behaviour was to exclude for longer & longer periods of time until he wasn't there at all. He has attended for 6 days since start of term so stuck back at home orbiting the house again with poor husband. In desperation after a violent incident at home psych started him on low dose of Sertraline to see if that'll take the edge off his anxiety. We have yet to see if it works or not as only 10 days on it. The schools response puzzles me as there has been no attempt to work with him either off site or within our home during exclusions & it has just literally felt like yet another behavioural strategy. I.e. Chuck him out for a bit and see if he learns his lesson the hard way?! Within this period I kept wondering how & why he had escalated so extremely & then discovered to my horror the schools channels of communication had failed. The school part of the institution thought he was under the therapy unit and the therapy unit thought he was under the schools supervision so our poor child had been left utterly uncontained for two weeks since returning roaming the school & creating utter havoc & resulting I believe in even more internal chaos (on top of hormones, pda, transitions over long Xmas holiday). I should also add here that it appears, in my opinion, that there is significant institutional chaos with a recent change of head & leadership team at the school & now theres a different agenda & ethos for the school that has changed since he started. When we visited before he started all dealings were with the previous head. So subsequently today at his 3 month placement meeting our son has been as good as expelled with the reason being given that he is too violent. I do not dispute that but I feel our son has been a casualty of this new regime change and without going into all the fine details the meeting was chaired by a very senior new teacher recently brought in who has no SEN experience at all. Ever?! There was no representative from the therapeutic team allowed to be present either?! And it was brutal to be honest - no empathy or suggestions of what we might focus on e.g. Other schools. So, understandably our son is devastated. As are we for him. This he feels is his 3rd school failure and he's only in year 8. At the meeting we were accompanied by his CAMHS psychiatrist who is great & has good holistic psychological insight. She is a consultant & v experienced. It was oddly reassuring that she was as blindsided as us at today's meeting & schools response as she has attended many of these meetings before. So to get to the point...
    We have found it difficult to find residential schools that seem to fully understand pda - has this been others experience too?
    Can anyone suggest any to us ? (I have spoken at length to Robert Ogden admissions, lovely lady, & they seem to be the gold standard but are v oversubscribed as son would require residential) is it worth going to visit to get more of an understanding of educating a pda child or is this the only residential school that really gets it meaning would we leave there feeling even more desperate.
    Should we find the cash for a private referral and go & get a pda assessment? Will a diagnosis be helpful in our new search?
    What do others think about Sertraline - success or failure?
    Any other observations will be gratefully received.
    Many thanks fellow pda parents/carers & kids.
  • Sorry you have had such a terrible time. Typical school reaction, knee-jerk reaction instead of looking at underlying factors and what they could do to resolve the situation and what they have done to contribute to or cause it. I don't have any advice on schools I'm afraid but I am sure someone will come on and help with that.

    PS "it's not included within DSM diagnostic manual etc etc" is a total cop-out because PDA is an ASD and they would diagnose it as an ASD with a PDA subtype or profile and ASD is in the DSM and the ICD!
  • webbwebb
    Posts: 2,581
    Hi Weary

    I would like to help if I can.
    My own son went into Residential School when he was 14 and I had to do a lot of research to find the right school for him.
    You are correct in that there aren't many schools that openly say they can meet the needs of children with PDA.
    Robert Ogden is a fantastic school for children with PDA but there are a couple of others.
    I will send you a Private Message as I may need to know a little bit more info to be able to help you find suitable schools.

    PM's are accessed via the tool bar at the top of the page.

  • Weary
    Posts: 17
    Thank you both for your helpful comments and Paula your PM.

    Has anyone heard or had any experience of Meadows School in Kent run by Barnardos ?

    Many thanks

  • If you are considering Kent, have you looked at Helen Allison? Our story has a depressingly similar ring to yours with exception that we found the excellent HA school and so far so good! It's run by the NAS and they totally get PDA traits......That term always makes me laugh as saying child has PDA traits is a bit like saying an expectant mum is a little bit pregnant!

    Hold on in there as it's such a nightmare but there are some good schools out there.

  • Weary
    Posts: 17
    Thank you for your kindness, your comments & pm. I will look HA up. It's given me a little hope that there might be a school out there for our child too - as well as us as a family of course. This is all so hard...
  • Weary
    Posts: 17
    Thank you all for your supportive comments, suggestions & kindness. All pm's & posts gratefully received.
  • Re the sertraline, for our son it literally transformed his ability to function on a daily basis. So we could then actually scaffold him and begin to teach him to manage his meltdowns without completely falling apart. He's been on it for years, at a high dose as we found that for the first year or two there were times when he clearly needed more. But been on the same dose for years now. Negative points are that he now can't function without it - we've tried reducing it. (though if we think of it as like insulin for a diabetic then it seems mad to try and remove it!) He sleeps too much and has poor memory but that may have been the case anyway. An alternative anxiety medication is Propanolol, otherwise antipsychotics like Risperidone can make a big difference to the outbursts. I am a strong believer in medication if needed, it has saved our son from needing some sort of secure placement.
  • Weary
    Posts: 17
    That's great thanks and really useful. Our psych upped his dose to 50mg yesterday so we are hoping it may take the edge of the high levels of anxiety that we are all feeling at present especially since his placement failed. I only have one, alright two then, demands at present : No violence or destruction of property. We have definitely been in the 'secure placement zone' for several weeks now and it's a hard one. We've had broken windows, police round 3 times & an ambulance take him into A&E due to the severity of meltdown. However, as we know resources are so thin on the ground there is nothing offered except at a push protective custody or a MH section. Because of the violence I'm really worried where he might end up. I'm resisting it & trying everything I can think of as I feel we would 'lose' him but his meltdowns accompanied by violence are truly grinding me down. Fingers crossed for the meds...
  • Hang in there .... whilst he's so agitated I think you just have to try and give him whatever he feels he needs to stay calm. Maybe have some emergency diversion things kept for when you urgently need them - a new xbox game or whatever will surprise (and impress) him enough to hopefully divert the meltdown. Its definitely NOT rewarding poor behaviour - its using every strategy you can to protect him and your home / family until the medication starts to work. 50mg is a very low dose but they only increase it in small amounts (25mg I think). Keep insisting that he needs more until things really start to improve - this could take weeks or months. My son takes 150mg. (the max they can take is 200mg) It's so sad and so unfair for us and our children that life ever has to get this bad. But remember, recovery is definitely possible and things can get so much better.
  • Hopefully it is OK to reopen this older thread, as there are strong parallels between this case and my own daughter.

    My daughter is currently 13 years old. She has always been challenging and stubborn even from a baby, but during the transition year from primary to secondary school, her anxiety levels shot through the roof.

    She only managed a few weeks at mainstream secondary school before we had to keep her off school for everyone’s safety. She masked her behaviour at school, but was violent at home, smashing everything during meltdowns, very violent behaviour towards both parents, even attacking us with a metal bar (loft hatch opener). She remained off school for the remainder of that school year.

    The only way we got help in the end was installing video cameras throughout the home, and showed some footage to an outreach worker, who was horrified and finally managed to get camhs and social services to take note and stop ignoring our pleas.

    A child protection order was put in place, which has now been reduced to child in need.

    We managed to get into a specialist local authority school for anxious children, but she is still not coping in this environment.

    She is on fluoxetine and risperdone but the meltdowns and challenging behaviour continue, mainly caused by going to school, but anything can set off a meltdown. My wife spends most of her day trying to keep her calm and safe, and my daughter rarely goes into school.

    We couldn’t get an asd diagnoses as she refused to participate in the tests, and can successfully mask behaviours, her camhs psychiatrist has put in writing that she probably has PDA but cannot be diagnosed.

    Over the last 6 months her behaviour has changed, she is much less violent to her family but self harms regularly, constantly says she wants to die, and been hospitalised about a dozen times due to suicide attempts from carving knives on her wrists, drugs overdose, drinking bleach, etc. Everything is locked away in multiple safes, but she still does things like running away and eating wild berries to try and end it.

    Police have been called out 20 to 30 times over the last couple of years.

    The only help we have had is talking therapy for the rest of the family, as my daughter refuses to engage in any therapy, including discussing anything whilst at hospital.

    My wife has given up work 2 years ago to be a full time career, I am struggling to hold down my job, and we are both on citalapram. Her younger sister is traumatised by what she keeps having to witness.

    Last week on her latest hospitalisation, we were at the end of our tether, and refused to take her home until we were given further help. The response was that they will hold an emergency meeting with the aim to put her into foster care. I couldn’t let that happen, so we agreed to take her home, if social services will help us find a residential school where she can get the help she desperately needs on a mon to Friday basis. We also said that we will no longer send her to the specialist school she is currently at, as it is not meeting her needs and causing most of the challenging behaviours.

    We are now researching possible residential schools. We are based in Wiltshire, but I will consider anywhere in the uk, as long as it suits her needs. She loves animals, and we think that a school with access to a therapy farm would be great, but not essential.

    I am aware that austerity is going to be our greatest enemy, no one has any money, and we are well aware that we will have a fight on our hands to get anything put in place. However we are determined not to fail our daughter. We have tried everything we can for the last 2 years, but are not equipped to give her the support she needs to learn the life skills necessary.

    I have posted here as I see that potential schools have been privately discussed, and really hoping someone can give us some recommendations or advice.

    We found a lovely looking residential school in the newforest with its own farm, but this seems to be for extreme cases where other residential schools have failed or for severely disabled children. I am worried that f she goes into such an environment, she may feel that is how everyone else sees her and take a backwards step, or maybe we are worrying too much.

    Also any tips on what is likely to happen next will be appreciated. Our social worker has told us that she will have to get her manager to put a case to a panel in order to request funding. We have an EHCP, but this doesn’t specify ASD or PDA.

    Reaching out so that someone can give us advice on schools or what we can expect to happen next.

    Many thanks for reading this post.
  • webbwebb
    Posts: 2,581
    Hi stressedoutdad

    I can truly hear your distress in your post and want to help.
    My son went to Residential School for ASD/PDA when he was 14 and it was successful because they used PDA Strategies, listen to us and worked with us.

    Do you feel that the reason your daughters previous specialist school failed was due to lack of understanding of her PDA or lack of peer group or lack of staff or something else?

    It will be hard to place your daughter in a Specialist School for children with AS/HFA/PDA if she doesn't have the diagnosis - but if the Psychiatrist has put in writing that he feels your daughter has PDA, the Social Worker and SEN Education Dept should take note of this when looking for the most appropriate school.

    Parents regularly say on here and on the PDA Society Enquiry Line that education only works for their child when the school used PDA Strategies - so you really do need a school that will embrace PDA, use the strategies, have PDA training for their staff, have a high ratio of staff (your daughter may need 1:1 if she is regularly trying to take her own life), the school grounds may need to be secure ie high fencing if your daughter tries to run away regularly, have a team of professionals on site ie Psychologists, Psychiatrist etc so your daughter can have regular (weekly) appointments with them to build trust and relationships.


    I will look at Residential Schools for your daughter and get back to you via PM !


    I'm not sure how much your daughters previous specialist school placement was but a Residential School will cost considerably more ie - £200,000 plus.
    This may be the hurdle that you are up against BUT -
    If the Education Dept, Health Dept and Social Care Dept all fund a third each, this would be the best way forward. It is called Tri-Part Funding and Social Care should negotiate with the other 2 depts.!

    You may need to compile a list of the schools your daughter has attended and why they failed.
    You may need to state why all 3 Depts need to fund the placement ie she needs support from Education, Care and Health to make a placement work for her.

    Some parents who are looking for a Residential School will need to Appeal against the School named on the EHC Plan - I hope you won't need to do this but if Social Care Panel refuse a Residential School, this would be your next step.

    I will pm you later this eve.

    Paula
  • Thankyou Paula for the reply and the followup PM. It is incredibly helpful. I am busy googling the schools now. Hopefully I will get some feedback from social services tomorrow to get a feel for how they are going to proceed.

    May thanks
  • Weary
    Posts: 17
    Hi Stressedoutdad
    I’m so sorry you’re having such a tough time. Some of the experiences you describe do have striking and depressing similarities to our own. If at all helpful we would be happy to share our thoughts on residential settings that we’ve looked at as well as our experiences with social services as we are still very much in the thick of it since I last posted here. Do private message me if that would be helpful.
    Weary

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