#PDAday

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

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?

Moon cycles (the ‘something’ in the air) and PDA 

You know those days that start off crabby? The ones where you’d love to be woken (anything past 6am) by a delightful little being who would love a cuddle but instead you are rudely awoken by an iPad obsessed grouch who just wants his immediate needs tending to instantly. 

‘Feed me & give me the ipad’ … I’m starting to wonder if I did follow these orders, how long I’d get uninterrupted sat in the sun?

However I do not bend to the rudeness and instead start the day strong full of a calm upbeatness explaining how ‘we’ can have our technology time after our outing. It’s beautiful weather here at the moment. It’s the school holidays and I’m in parenting top form and adamant that time with mum will be fun and fulfilling and not wasted on screen time. 

But there’s definitely ‘something in the air’ that I can’t put my finger on. It’s been here about the last 3 or 4 days. Mild at times. More severe at others. But most definitely overlooked until just a moment ago, and dismissed as just one of the joys of PDA. But i’ve just read a post on a very helpful PDA group from a fellow mum who remarked about the full moon… and there it is…the slap in the face of a reminder that as i’ve seen umpteen frickin thousand times before, the MOON plays havoc on my pda’er!

Somehow daddybear and I had even shared a conversation about the position of the moon last night but both neglected to acknowledge the link between this beautiful bright (almost) full moon and our niggly, moody pda’er. 

He isn’t always THIS grumpy. Sure he struggles with many a thing that drives us insane and cause him distress, but he’s not always this grouchy. 

The moon plays a role and I seem to neglect the power of this phenomenon each and every time!

Today’s moon moments included, being severely pissed off that mummagrizzlybear was not offering bacon gaps for breaky, volatile monopoly gaming, equally irritable about ‘waiting’ for friends to arrive and then ‘the traffic’ being in our way en route to our outing and then a unwarranted days worth of grouchyness towards our friends youngest child as well as an inability to engage socially with people he can usually ‘cope’ with. Now some of these things seem entirely ‘normal’ (of parenting joys) and you may only get this if you’ve experienced it…but mumma just knows when it’s more out of the ordinary and something is up! 

I didn’t discipline in the same ways today as I may have done a week ago, because something just told me another force was messing with him. 

I know the moon has taken its toll as baby pda’er bear is currently snoring away on my shoulder (8 pm ish) instead of sharing in the ‘boys-nite’ star wars movie. He’s not hurt anyone today or fully melted-down but it’s been hard work for him. He’s shattered. I’m proud of his achievements. 

The moon revelation reminds me that each month I say I’ll make some kind of a chart to track the moods and cycles to compare and analyse and then I sit here and smirk because a) I’m not really going to do this and b) because I already can predict the findings! Not only this, but I have also thought many a time about also tracking PDA difficulties with my own cycle and although with this too I am convinced there is a link, a chart tracking mummagrizzlybear’s hormones alongside challenging behaviours will probably only lead to negativity and self-criticism!

Scientifically of course i’ve attempted to find research to quantify the lunar effect theory  (I.e. I have googled it!) But in the absence of anything concrete I also remind myself that ‘their’ research was probably not done on a community full of those with varying ASD forms. 

So the next time I hear anyone utter the words “there must be something in the air”, I plan to first check out the lunar cycle before critiquing parenting because for me there really is a link!

Dear mum

A poem to ‘that’ mum

Dear special needs mum I saw your eyes, I know you were trying so hard to hide, to hide the hurt, the struggle, the pain, you see I know this because i’ve suffered the same.

Dear warrior mum who battles so strong, to ensure her children’s needs are met and they feel they belong, you fight for understanding, you fight for their rights, you’ll do this each day and long into each night.

Dear struggling mum who is torn between kids and work, stretched so thin without any obvious perks, striving to be a good role model, keep a happy home and of course being that trusty companion at the end of the phone.

Dear tired mum who gives so much care, has little support but will always be there, there for her cherubs, her family, her friends and continually giving because her love never ends.

Dear inspirational mum, the juggling goddess, managing your life’s hectic duties really does impress, you cleverly balance all that is demanded, from form filling to meetings and unexpected dramas, she makes it appear that nothing alarms her.

Dear thoughtful mum, who worries and fears, of the hurdles likely to follow in the next 5 to 10 years, always looking ahead, striving for better, preparing for change and softening any blows, without this where your children would be, who knows.

Dear under-appreciated mum holding back tears, sad from the battle you faced today but have handled for years, painting on that smile, constantly dusting yourself down, so bravely aware you’ll get no thanks but you must not reveal your inner frown.

Dear unnoticed mum, standing at gates, desperate for others to truly know your fate, ignored by many, shunned by some, because ignorance breeds and ‘special needs’ is more scary than fun.

Dear mum who knows best, and sees all the glory, of their special need children and are brave enough to share their story, to those mums who reach out to others, for those daring to speak out loud for those endeavouring to raise awareness, we are grateful for you in our crowd.

Dear insightful mum, who knows all the up- sides, of living with ‘difference’ and refusing to hide, to those mums embracing, educating, accepting, knowledgeable and ever learning, because of you, our children are blessed and safe and will never be left isolated or yearning.

Please don’t ever feel alone. Connect with me on Facebook if you’d benefit from support of any kind. I won’t have all the answers but you’ll not be alone and perhaps together we’d help each other discover a broader support network.

https://www.facebook.com/mummagrizzlybear/