#PDAday

The letter that she wishes the senco had received; a therapeutic release of the emotional baggage hauled around since son was excluded

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Dear Head Teacher

Today marks a national awareness day for Pathalogical Demand Avoidance (PDA), the little known form of Autism, which our son, your pupil was diagnosed with in January of this year. This letter has been thought about over and over again, but never sent. I write to you today in an attempt to assist you in developing a greater level of empathy for families such as ours in the hope that this will serve you better in the future in supporting the community who place a great deal of trust in you as Head and SENCO of the school .  

http://www.pdasociety.org.uk/blog/2016/05/pda-awareness-day-15th-may-2016-how-we-are-raising-awareness

When a family arrives at the heart wrenching conclusion that their child is somehow not conforming to the socially accepted expectations, whether this be through not meeting milestones or by displaying perculiar behaviours, they are extremely likely to have given this much deliberation. By this ‘deliberation’, I’m potentially talking about years worth of worry and discussions around how, as mere mortal parents, they may first find any other way to explain away their child’s differences and somehow compensate and/or fix the problems they have been encountering. By the time they have brought their concerns to your attention, it is extremely likely therefore, that they feel that they have ruled out all ‘other’ possibilities and believe me, this will have included whether or not their parenting was at all at fault. This will not have lightened the weight they carry on their shoulders, as many a parent feels responsible for conditions for which they have no reason to blame themselves for, but without the obvious presence of a medical diagnostic explanation for the differences which they have identified in their child, believe me when I explain, that they are nervous as they approach you for help. The manner in which you respond to their first attempt to request support really matters. It will go on to have such a huge impact on the family moving forwards. 

Whether they approach your school or staff with a well thought out letter or a badly timed by chance conversation in the play ground, please hear them. Remind yourselves that this parent has reached both their strongest and their weakest point simultaneously, something which will confuse them time and time again. Realise that them reaching out for support is a) the acknowledgement that ‘life’ has become perhaps too challenging for them to continue without discussing their concerns with ‘professionals’  and thus making them feel failures and weak, and b) the strongest thing any person can do when feeling scared, isolated and lost is to ensure that they no longer suffer in silence. Can you see how important your response will therefore be? 

Now as educational professionals, I am certain that neither you or your staff profess to be medical experts. You may have a wealth of experience of various children and their presentations of various conditions, but as I’m sure you will agree, no two children are the same and in many many cases, parents obviously know their children far better than any teacher may. It is for this reason that any judgemental response to a parents concern can be so damaging. Equally a dismissive response can have the  same impact. This presents a challenge for you and your staff but there is a simple, failsafe response which can be practiced to promote positive relationships between parents and staff at your school. This same approach will allow trust and respect to develop and will demonstrate that a collaborative, proactive attitude is preferred when in comes to overcoming challenges and difficulties. The key is to empathise; truly hear and believe the parents, having given them the appropriate time and safe space to share their concerns with you. A parent who feels that they have been listened to and taken seriously, will feel supported and will feel that they have a plan of action for the next steps. Now I appreciate that these next steps may well be ‘watchful waiting’ or simply monitoring the situation further, but it goes without saying, if the school has practiced effective empathy then the family will no longer feel alone in this task and most importantly, this will influence the child at the heart of the matter.

It would be hugely beneficial to families if you could proactively signpost them to other forms of support and information, there are council provisions designed to empower and inform parents who have concerns about their child’s educational needs, by highlighting these to families you will communicate that you believe they should access advice and are confident that as a school you will undoubtedly be providing the recommended support. At the earliest opportunity it would be brilliant if you could describe the various levels of support that you can offer as a school and perhaps describe the thresholds you feel a child would need to reach before you’d consider it appropriate to initiate these types of support. Parents who feel they understand the system and/or the support available are less likely to feel they need to ‘fight’ for services. Parents who feel supported by their child’s school are less likely to require intervention from practitioners outside of the school, who seem to solely have the role of ensuring that a family is able to access the support that school  should have been putting in place already. You can save yourselves countless meetings if you are upfront with parents and open about what you can and cannot do at any given time. It is widely known that parents are more than capable of requesting referrals on to other agencies and medical teams but it is also very clear that requests from education settings are somehow still taken far more seriously. As I am sure you are aware, waiting lists for specialist teams are lengthy. It costs nothing to you, aside from your time, to help parents with these referrals and the earlier the better, delaying simply costs the child in terms of their wellbeing and the school as in the mean time you are more likely to need more services for intervention. 

Your school, like many others, promotes exemplary behaviour and of course has high expectations for its pupils. Parents of  children with additional needs, challenging behaviour and disabilities also have high hopes and positive aspirations but fear greatly that their square pegged child may not fit your round shaped holes. These parents and their children need a supportive senco and team of staff who recognise difference and are flexible in their approach to promoting the ‘golden rules’. Your effort to demonstrate the lengths that you can go to accommodate and include all children will not go unnoticed. Physical disabilities are often better understood and more evidently acknowledged by means of adaptations to access for example, but as a school you have the greatest opportunity to promote a broader understanding amongst the youngest generations about invisible disabilities and additional needs. You can promote a healthy non judgemental approach so that families are not left excluded, you can encourage tolerance and empathy so that families are not isolated and you can lead the way in ensuring that whole communities are responsible for raising each individual child to be the best that they can be. 

Communication is vital. It should be open and honest and encouraged. Not only does it allow a parent to develop a sense of trust, it demonstrates efficient collaboration in attempting to resolve difficulties. Effective communication can eliminate the ‘us vs them’ battle. Where a parent has to fight for information, explanations and an adult perspective on events, it seems obvious that they are likely to come to believe that the school has a motive for withholding information. Home-school communication books should work both ways. TAC meetings require a senco and class teachers presence. Referrals require both a parents and a teachers perspective to be accurately portrayed. Without your support in communicating efficiently the child at the heart of the matter will suffer unnecessarily. 

Your school has used a disciplinary exclusion initially as a means of ‘teaching consequences’ and I have found many families, specifically those with children with PDA, who have experienced the very same. At the point of exclusion you were aware that our son awaited his ASD Assessment but sadly you were unwilling to await the results of this or any recommendations that followed before forcing our hand in moving our son on from your school. There is little I wish to rectify here as in hindsight the move on from your school may well have been the most healthy outcome for our son. However, there are points I wish to raise to  help you consider how your school can, in the future be more supportive of other families. 

Firstly, stating ‘prolonged period of challenging behaviour’ as the reason for the exclusion does not satisfy a parental curiosity about the nature of the events that led up to the point of arriving to collect a highly distressed child from your care. This was an ideal opportunity to convey compassion but instead you opted to ensure that you isolated both parents and child.

The manner in which you handled me upon arrival was cold and detached, and your decision to very swiftly move both my son and me on from the school premises put both him and me at further risk of harm and communicated very effectively the lack of empathy you were able to afford us. For the benefit of the other families who must continue to endure your services as Head and senco to their child, perhaps you’d consider a short course on updating your people skills?

The letter you provided about exclusions makes suggestions about contacting the board of governors but I note that unlike other schools you do not make the information about how to contact the governors readily available on your website and this presents a barrier for parents who may already feel extreme discomfort in contacting the school. Perhaps this is something you could rectify, especially as, if the complaint a parent wishes to raise is about the headteacher themselves, they are unlikely to want to request the governors details from the head or her staff.

Where a child makes allegations about being mistreated by your Staff and this is brought to your attention, first verbally and then formally in writing, it would be reassuring to parents if you communicated openly about the protocols which must be followed and provided copies of the child’s viewpoint being documented on your incident reports as well as copies of the accidents and injury logs. On the last occasion that this happened, you will recall that my son was taken for medical consultation owing to the injuries that he returned home with when I collected him as he’d been excluded, and never once have the school attempted to check up on his recovery from this nor provided me with any evidence that this was appropriately recorded. 

Not once since his initial exclusion has the school made any attempt to check in on his wellbeing, leaving me in no doubt at all that my sons needs had been the furthest thing from your mind and that instead the priority had become how you could move on the issue you no longer wished to have in your school. In the future, extending consideration and compassion to families would promote a more caring ethos of the school.

Making threats to permanently exclude a child with no evident legal grounds to do so, to me has seemed the most obvious form of bullying. As my son has sadly been left on role at your school, we have been required to rely upon you to complete referrals and necessary paperwork, which would have been better completed collaboratively with us as his parents, however you have failed to respond to my efforts to communicate with you,  you have refused to initiate nor attend a TAC and have left me in a position where I must make assumptions about your motivation for ignoring us. Should you find yourself in this situation in the future it would be hugely beneficial to the family if you could provide confirmation about why it is that you believe a child cannot return to your school and why it is that you feel you have the right to make threats about permanent exclusions? In our case, we cannot accept that every effort had been made to support our son in your setting, because, as you are very aware, we are yet to obtain an EHCP for him, and this of course would be the way we could demonstrate that you had attempted to meet his needs. Just as importantly, should you find yourself supporting a child who has an imminent assessment due, it would be hugely beneficial to the child if you could be as flexible as possible and resist making life changing decisions until you have the medical diagnostic information available to inform you.

At this point, you have been forwarded copies of the diagnosis paperwork but due to your personal absence from the team around our child, you have been sadly excluded from joining us on our journey to understanding how PDA impacts on our son and his ability to access his education. You are missing out on enhancing your schools knowledge and broadening your teams approach to supporting children like our son. We have incredibly knowledgable people supporting us now, who could help you see why your traditional teaching strategies are ineffective with children who have PDA. Not only this but they could show you the very techniques that do work. Choosing to opt out is your loss. You are paying for his time at the alternative provision but are playing no part in his onward journey, nor supporting us as a family to ensure he has an EHCP to be able to move on safely. Ironically, this means that the longer it takes to secure this, the longer you’ll pay for his time at the APA. 

PDA awareness day brought me the courage to compose this letter. But not the courage to send it. 

You see, the treatment we have faced since the day I first discovered an article about PDA, nearly five years ago, had been destructive to confidence and self esteem. Living with an undiagnosed child with PDA was isolating and devastating. Attempting to ensure your child’s needs are met, when you cannot describe their needs nor the approach that is required to support them, is paralysing. Countless appointments with professionals who knew nothing about PDA provided nothing but stress.  Being rejected and excluded in more ways than one nearly broke everything that had ever been important to us. 

Receiving his diagnosis in January has enabled us to educate not just ourselves but our son too, we will support him to become an expert on his condition. We are back in a position where we can work towards building all of our confidence and resilience levels. We are fortunately encountering passionate, compassionate, trustworthy professionals who no longer need us to squeeze our different shaped peg into restrictive holes. PDA awareness is growing. Once upon a time schools were ignorant about dyslexia, there’s hope for the future? We are moving forwards into the unknown but it’s far less scary than staying in what we knew, but knew did not work! 

I accept that one letter will not change one persons opinion or attitude. But surely it can plant a seed?

17 thoughts on “#PDAday”

    1. Thank you for taking the time to read and comment. It remains the usual rollercoaster. Today we have another TAC meeting and I’m attending a workshop on the equality act. I like to keep myself up to date on legislation in the faintest hope that one day I’ll b able to send an appropriate complaint about the things that happened to us. For now, I work on staying positive.

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  1. What a brilliant, insightful & honest account. We are currently ‘fighting’ with our son’s school & this letter feels like reading my thoughts.
    Wishing you and your son all the best and here’s hoping that not just awareness of pda but true understanding continues to grow.

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    1. Thank you. This has been the most I have shared in a long time. I share amongst my virtual -community who do not know us. I’m not yet confident enough to share in my real world. So you taking the time to read and respond has really moved me. Thank you.

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  2. Good luck to your son. We had a more supportive school who tried their best to get things right and life was still incredibly stressful – so I can’t really imagine how hard it has been for you.
    Have hope – we now have fantastic support at an ASC base attached to a huge mainstream secondary. With the right approach our PDA son is thriving. Things can get better.

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  3. Your letter articulates our experience also and thank you so much. Reading it has taken me a little further away from the loneliness and isolation of being a parent of a child who is , as you describe a ‘square peg ‘ being forced into a ’round hole’. I hope your son and your family are being supported and understood and have your place in the community like any other family. Your letter demonstrates that you are a dedicated and loving mum and your courage and strength has helped me.

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    1. I’m glad I have reached you. Isolation is far more debilitating than it sounds isn’t it? In the long run I’d like to do something proactive about this isolation that parents like us endure. Stay in touch x

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  4. Whilst we are lucky to have a school that tries it’s best to be supportive, I feel your pain. 3 temporary exclusions under our belt and they still think consequences like this work.
    Just know that you are not alone 😍

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    1. Knowledge is power but educating the educators takes some doing! As awareness grows, let’s hope that education settings will strive towards a more flexible style of teaching. Disability discrimination is rarely spoken about and when it is, little is done to ensure that education settings are held accountable for the short comings. I’d like to be part of the force that makes some small changes in this domain. Thanks for giving my blog your time. It’s appreciated.

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  5. So sorry that you’ve had to go through this – sadly, you are by no means the only family who has faced such challenging behaviour from a school, and from staff who have no justification for failing your child. I hope you do send this letter! I think the first half of it, which wasn’t necessarily personal to just you, should be read by every educator… PDA is real, why would anyone make it up and live like this when it’s so much harder than living with a neurotypical child? And yet, our children are amazing, and can teach others so much. Hugs to you. Off to share x

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  6. This is the reason why the PDA Petition through the Scottish Parliament has happened . As the Main Petitioner I was totally ignored as a mother . If I hadn’t had such an understanding GP we would never had reached this stage . He never abandoned our family .
    http://www.parliament.scot/GettingInvolved/Petitions/PE01625
    Over the years I have encountered those ” Who knew best , had twenty years experience , and a Degree in their speciality . Totally clueless CAMHS whose knowledge of Autism Spectrum in my experience is dire . It’s not only CAMHS who failed us , Dieticians, OT , School Nurses , School Doctors , LS teachers knowledge of Autism was shocking , Educational Psychologists , the list goes on forever.
    There is very little good practise in either Learning Support or ASD , ” patchy at best ” was one of the comments from a leading Professor in her submission to Parliament . Bottom line , lack of investment over the years and training .
    Not one Government Strategy or Policy worked in out case . The only system that works by my experience is the system to cover up the truth and the system to deny you what you are entitled to support wise .
    Those who have sat quietly , listened to the story have one by one given us answers to the jigsaw . I still don’t have all of them but that’s work in progress .
    The Lib Dems have been amazing in their support with this Petition . Other Political Parties fobbed us off
    . I am going to use this letter to show others this is EXACTLY what the majority parents go through . This should be used in Student Teacher Training ! Numerous others could learn a thing or two as well .
    Just brilliant .
    Thank you for sharing .
    Patricia Hewitt xx

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  7. Oh my goodness ! This is such an insightful view on the journey of parents concerns and the ‘Seasaw’ effect I have felt with school in particular the headteacher. Teachers raise their concerns each year yet the headteacher contradicts everything even though my daughter spent most of her time being labeled naughty and having to be sent to headteacher from age 3.5!!
    You have expressed everything I felt. The last resort going to the teacher/headteacher. Not sure what the problem was but a journey of teachers concerns and then rebuffed by the headteacher.
    I woukd love to send thus letter to my daughters school to educate them on the confusing path they lay out for us. In fact this letter should be sent to all schools!
    My daughter is just starting on the journey of diagnosis after 12 month wait to cahms and numerous discussions with teachers from age 2 at childcare right up to now age 6.5 yr old.
    Thank you for sharing as if not helping teachers it has certainly gave me the confidence to challenge their process

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  8. Hello, big hugs to you and your family. I understand that it’s difficult to go public with real people in your life but, when you can, it will (I hope) give you personally more strength and support. My daughter (10) keeps up appearances at school so it all comes out at home (1st community paed consultant appointment ended after 40 mins and the letter said ‘She’s a lovely girl’, 2nd one started with a different doctor asking ‘Why do you think your daughter has autism?’ with said daughter sitting in there too). Once people know, you will find that there will be people (often the unexpected ones) who will just ‘get it’ and will genuinely ask how you are and how things are and, if they’re horrible, you can say so with no fear or shame and can share a little tear or hug or hand on the arm if you need to. It’s a lifesaver. Please don’t feel that you have to hide, plus you may help another desperate parent feel brave enough to say ‘Me too’ and, hey presto, you’ll have another ally and source of mutual support. My usual response when people ask how the child/ren are? ‘They’re horrible!’ 😝❤️ xx

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  9. Thank you so much for writing this. I consider myself lucky in the sense that we have a very empathic SenCo, even though she admits there is little she can do to help us. As PDA is not ‘recognised’ in our county, our daughter was diagnosed with ASD and nothing more. To seek a diagnosis for PDA we’ve been told it would cost us around £3k. As she is ‘progressing academically’ and manages to hold it together at school most days, she doesn’t qualify for either an EHCP (and so can’t access many services) or any additional support in class. What the school don’t seem to care about is the fact that, at the age of 8, our daughter still refuses to dress herself or bathe herself, can’t ride a bike or scooter, and is unable to maintain friendships due to her controlling and obsessive nature.

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  10. Thank you so much for sharing, my daughter 14 has a lot of different diagnoses but never ASD/PDA even though I feel she’s on spectrum. ADOS was used but failed to diagnose, I’ve come across my fair share of professionals that have interpreted my sensitive information and blamed in writing mine and my husbands parenting skills even though we have complied with every course different professionals recommend just to justify were good parents.
    Your letter gives me hope and strength to carry on pushing for the right support my eldest needs.
    Thank you x

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