#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?

Grieving and functioning … post diagnosis 

Feeling sad about losing something you never truly had seems quite a mixed up concept

Mummagrizzlybear has been exhausted for too long,  a good night’s sleep does not relieve it and the opportunity for a ‘break’ doesn’t cut it either. Almost 6 months ago the chaos began and we can probably count on our fingers the ‘normal’ days since then. The irony of the word normal makes me chuckle sarcastically inside (mustering the strength to actually laugh is just asking too much); what I now refer to as normal, I’m certain, is anything but normal to Joe blogs. Is it the lack of normal that wears me out so? Would a week of normal restore me? 

There have been waves of emotions since receiving babybears official diagnosis back in January this year. We’ve probably dipped a toe into most of the stages of grief along the way and I felt I’d allowed myself the kindness to explore what I feel we have lost as well as fully recognising and appreciating the condition and its impact on my baby bear, so how can it still hurt and shock me when I’m triggered into noticing grief once more?

This week, year 3s in our area have been packed off on their first camp away with school. Baby bear had his name down to go prior to his exclusion. He’d however been excluded from this camp far before his official exclusion from school. School had not cashed my cheque for the deposit as they did with other mums. They instead brought me to a meeting where they described what they ‘might be able to do if his behaviour improved’ and rejected my offers to provide a carer to attend along side him so that he may be able to experience the camp along with his peers. I accepted that he’d need more support than others, but was adamant that he shouldn’t be excluded due to the nature of his disability – surely that would be discrimination?  However, school were not in the least bit interested in my suggestions and as it turned out, they made pretty sure he could not attend anyway. It’s been this camp that has alerted me to another facet of our not-normal life. It has resurfaced the grief. I’ve been exploring uncertainties like “would he have coped if he had been given the chance to go?” Right at this moment any change to routine causes massive disruption to his well-being, any moments mummagrizzlybear attempts to steal to herself are greeted with a needy Baby bear impressing demands for support in one shape or another, so could he have gone away for 3 days? Will he ever?

Feeling sad about losing something you never truly had seems quite a mixed up concept. But that’s where I’m at. I’m sad that he’s not neurotypically being packed off to camp on his first adventure away from home. I’m sad that he’s not in the slightest bit bothered that his peers get to do this. I’m sad that my aspirations about his future have diminished into a series of uncertainties. I’m sad that ‘new things’ require such a careful tact, I’m sad that other people can make ordinary requests of their child and not be met by anger. And I’m selfishly sad that I’ve reduced my working hours (to provide more caring hours and find a better balance between work and home) and feel zilch benefit so far from having done so (in fact the only things I’ve clocked is the half size pay packet and lowered moral).

I’m not so lost in this grief that I am unable to notice the ‘good bits’. I can name them. These past few weeks there have been a few worth mentioning. We’re embarking on night number 7 without a night-waking (strange correlation to having attended a sleep workshop last week!) We’re receiving support from professionals and there seems to be light ahead of next week’s TAC, baby bear has taken to holding my hand (on more than one occassion) in an affectionate nice way whilst we walk the dogs and we’ve shared some nice family time out together. Like I say. I can name them. Even crack a smile when thinking about them but it’s somehow not masking the sad bits.

A friend a week or so ago commented that I’d been absent but she wasn’t going to push me, she’d just figured that we were doing what we needed to right now. Another friend mentioned only today that we’d not seen each other in yonks. I’ve unanswered messages sitting in my inbox as well as incomplete work tasks that I’m routinely ignoring. I’ve not been for a run for ages and make-up seems an unneccesary chore. Professionals pass me tissues and ask questions about whether I have a supportive GP? I’m going through the motions of making sure I get ‘me-time’ or planning things to look forward to (a hen do, a holiday, a concert) but all with little positive effect and this is so unlike me. I’m irritable but functioning. Constantly tired but functioning. Emotional but functioning. Cutting myself off but functioning.  Seeing it here in writing is scary. My wellbeing is slipping and I’m in the driver’s seat choosing this path. How can this be? I know depression to be a stage of grief but it’s a place I do not want to visit. No matter how fleetingly. 

I know kubler-ross describes the five stages of grief to be Denial, anger, bargaining, depression and acceptance. They do not have a time frame for each phase to pass nor an A to B strict pattern to follow. There’s every likelihood that I’m simply re-visiting a stage that I’m less than comfortable with. And that’s ok. It has to be. Self-kindness has to be far more beneficial than beating myself with the metaphorical stick for feeling low. 

So for me I’ve given myself a bench mark for what will not be ok. Just as an extra self-care checker should I become scared again that this depression might not pass. If I can answer ‘yes’ to these, then I think i’m ok. If it starts to be ‘no’ then I’ll speak to a doctor.

1) am I able to enjoy myself in the company of others?

2) do I notice the sun or the blue sky?

3) is there other evidence or explanations for why I may be feeling low?

4) do I still consider myself to be functioning?

The diagnosis will not disappear. Life will continue to deliver little reminders of what ‘might have been’. There’s little point fighting it or playing the ostrich. Embracing it will be key but gently and only when I’m ready. 

Jekyll and Hyde life

When you find yourself googling ‘how to relieve pain after strangulation’, I guess you could say things got pretty bad last week.

Ironically I’d just had a visit from the SCIP worker and uttered the fateful words ‘touch wood but things have improved’. Our meeting was useful and we discussed plans going forward and ideas about how to address the newest hurdles. Today’s topic was mostly about strategies to deal with our Pda’er and his ‘need’ to control me. The upshot being that it was about weaning him off me. Gradually showing him that he can spend short periods of time independent of mummagrizzlybear. 

PDA, as we know, creates severe anxiety where our son is driven to control pretty much everything and everyone as one of his coping mechanisms. Due to the past few months of stress, our son regressed, massively, and has been limpet-like ever since. It’s not comfortable for him or for me. In a strive to continue moving forwards I was hoping we’d develop strategies to help him see that he can ‘be’ without me, much like he used to be. He used to play independently and be comfortable with ‘free-time’, so I’m hopeful we can return to this instead of remaining in the state of needing 100% 1 to 1 attention 24/7! It needed to be baby steps and I’d take just 1 step at a time.

Step 1: set up activity to do alongside me

I’d agreed with babybear before he left for school that on his return, I’d have the playdoh out. I helped him find the toys he likes to play with and set myself up a task to do alongside him at the table. He asked me as he does a lot at the moment, to ‘play with him’, which loosely translates as sit here and do the things I tell you to. So I say, ‘mummy is going to do this paperwork here for 10 mins and then I’ll join you’. I keep to my word and join him, stating that I’ll build 5 of the cars he’s demanding I create, after which I’ll hang my washing up. At this point, he appeared to be managing and carried on playing independently. 

It was then that I heard the shriek. An out of control I’m losing my shit, screech, yelling about when would his brother be home because he’s bored and school should never have changed the times because now he has longer on his own etc etc. Queue the irrational Jekyll and Hyde type shift from calm to outraged. Seemingly unprovoked but evidently reflecting over the ‘changes’ he is unhappy with the monster errupted.


Mummagrizzlybear remained calm and feeling a sense of strength from the empowering hour or so with the scip worker, I refused to get sucked in and over react. Any mess can be cleaned up right? The playdoh was launched in great globs across the room and horrific screams erupted from him as he unravelled. Getting minimal response ( assuming this was for my benefit) he launched in to the expletives and more obvious destruction right under my nose. Without wishing to goad him I calmly reminded him that he’d be responsible for the clear up and suggested he head for his room where his sensory relief gadgets and gizmos might help. He was past being compliant or accepting my ideas and so the destruction continued. Refusing to engage in this (and ultimately feed his desire to have my undivided attention) I turned away and at that moment he saw red, running and placing both his hands around my throat from behind me and using real controlled force to squeeze my airway. I’m not sure why I didn’t struggle, possibly in fear that he’d accidentally go too far if I put up a fight? I don’t know? I’ve never been strangled before but somehow I stayed calm in an attempt to call his bluff I guess. Luckily it worked. He moved on to more destruction and I removed myself to safety, communicating to him that I was not prepared to be with him whilst he was out of control and reminding him to use his room as his safe space.
In a breakthrough moment he retreated to his room, I summoned strength to offer him reassurance and ensure he had the sensory resources he might need to calm. In time with lots of cursing (from him) and one attempt to flee the house, his tact changed to blame. “It’s all your fault” he was yelling, “you should have given me my medicine” and “you should have helped me”.  I realise in that moment that we forgot to give him his meds last night, could it seriously be connected? Wanting to restore a sense of calm control I offer him some medicine now and take the opportunity to ask him what it is that I could have done to have helped? He was refusing meds and claiming that he wished to stay ‘angry’ . This provoked a reaction from me. How could anyone want to behave like this? I remind him that he could have really hurt me. He cries out in a distressed way that it wasn’t him who did this. He was devastated to reflect over this and he began to talk of the things he’d broken too. Eventually, he takes some meds, spends 10 mins on his bean bag with a timer as a ‘time-out’ for the destructive and rude behaviour and then moves on to an apology. He was also directed back to all of the things he’d thrown or wrecked and ‘supported’ to put things right again. 

He was exhausted. Mummagrizzlybear was sore but in one piece. Bigger bruv had returned amidst the commotion too and was safe. A level of calm had returned. The baby step had been taken and the seed planted. He went on to manage a short period of time alone. 

Mummagrizzlybear wishes that it hadn’t of got so out of hand but feels that some gains have been made despite enduring brief strangulation! Calm parenting helps. Remembering not to get sucked in helps. Demonstrating self respect and maintaining boundaries helps. We achieved short moments of breaking away from the constant 1 to 1 he demands. We even shared a moment of true care and consideration whilst he was remorseful. Later that day we shared tenderness. Recognising what helps and what victories are made helps us all survive Jekyll and Hyde life. 

Today’s shift of mood, much like most others was seemingly unprovoked or at least unwarranted. The shift to irrational, volatile behaviour can be instantaneous and this sums up why he is currently not in mainstream nor managing the usual peer relationships one would expect of a child his age. Today’s physical outburst followed cuddles and kisses and a happy, calm homecoming from school. It’s this that tends to catch me off guard; all Mummygrizzlybear had suggested was that we would walk the dog. Although my first warning comes from him in the  shape of his growls and objections, when I continue to stand strong and not allow his threats of ill behaviour to manipulate the situation, he becomes quickly out of control and bubbles over into irate. In this state, he unleashes the verbal abuse, screeches and violence and when I retreat he’ll break or destroy things. 

Over years of learning, we’ve reached a point where eventually he can be guided to a safe space to calm and today, much like any other, in time he calmed and afforded me the apology and his explanation for his frustration. There lies the victory. In time we were out on a short walk with the dog. Where safe to, I believe in always seeing through the original plan, no matter how subtly, as it can reinforce the message that the outburst was ineffective and provides an opportunity for us to reflect on how ‘well’ the task had actually gone. Today the walk was short. Today I recognised that if I pushed for more we would not have had this outcome. 

I’m not certain which character I tucked into bed nor which character might wake through the night or greet us early tomorrow morning. But I do know that both characters are my son. My babybear. And whether calm or irate I love him. I’ve grown to know both Jekyll and Hyde and accept that little helps us predict which version we will encounter from one minute to the next. It’s dawned on me that not many other environments accept any person to be more than one personality. For most it’s too much uncertainty to handle. If you analyse the people with whom babybear appears to feel safe and content, I’d say that these people have all developed the skill to show him that it is ok for him to be whomever he is in that moment. I’m thankful that I can support others to appreciate that it is PDA that creates this and not wilful naughtiness. Punishment and rejection are damaging but onsequences and right from wrong can still be taught. Calm parenting helps. It’s not easy and certainly not always remembered but I’m human and to learn, I’ve had to get it wrong along the way. Luckily for me (I jest) PDA ensures that life remains unpredictable and the rules are constantly changing so I have ample learning opportunities! 

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!

Holding up the PDA- Mirror

A parents ‘uncomfortable’ acknowledgment of similarities shared with their PDA child

Mummagrizzlybear found this observation a little bitter.

It came into my awareness innocently enough, but the more I thought about it, the more sense I made of it. I remember once being told that the very things that irritate you about another person, may well be the very things that annoy you most about yourself, if you first allow yourself to look that honestly at you. I’d found a few occasions where this had materialised to be quite true when it comes to friends or relatives that had pushed my buttons – they were probably being a lot like me, or saying the things I’d have said or simply showing a side of them I found less attractive. We all have those sides. My unattractive qualities make a depressing read. Even my children have at (shittier) times been described as ‘just like’ (mum or dad – delete as necessary!)

So when I noticed my internal sulk over things recently having not quite met my expectation, I got to thinking, how often I explain away my babybears’ (less than delightful) behaviour on account of his experiences having not met his expectations.

With PDA in our house we notice the huge need for ‘things’ to remain in the control of the pda’er. Everything has to fall in line with how he expects it to go and where possible should be exactly as it once was before or at least how he envisages it to be. We all rely a little on ‘expectations’ but most of us are able to appreciate that a) things can and do change and b) that we have to be adaptable when the unexpected occurs. For our babybear with PDA these concepts cause physical pain and severe emotional distress. I too, now reflectively notice, that I was in discomfort over my experience…it really hadn’t met my expectation. I’ll give this some context and hang my head in shame for typing the words, but mothers day wasn’t all it was cracked up to be. There. Let the guilt trip begin! (And if Daddybear ever reads these posts, please know that I recognise your efforts and am in no way blaming any particular event…and I love you for trying to help us hold it together so we could pretend it was picturesque). Bluntness from kids, who quite frankly have this year mastered the skill of selfishness, was a little soul destroying…

“Mum, here’s your card, it’s rubbish but that’s all there was” (it’s an old (er)  lady (Mothers day) card!) and “We would have got you Forrero Roche but dad said £12 was too much, now can I go play on the play station?”  Happy Mothers day to me, Happy Mothers day to me….

There were moments that I looked on at them in admiration of the little spirited creatures I’d helped to create but I mostly took deep breaths and wished for something a little closer to either the adverts you see on TV or the posts my perfect friends were sharing on FB! I was extremely glad that I’d chosen this year to book to take my Mum and my Sister for a couple of hours at the Spa as gifts to both of them and had therefore also needed to book myself in too. There were a few hours of bliss, which I purchased and organised for myself.

So there we go. Sulk over. But classic example of my (unrealistic) expectations setting me up to feel rubbish. And it sucked. And my boy feels that (or something close to it) numerous times a day over things we just overlook. He expects the cereal to look the same in the bowl as the day before and his sandwich filling to be the same texture and smell as the day before that and the socks to feel comfy, and the taxi to come on time and the journey to be without delays and the routine to not be interrupted and for everyone to do as they said they would and for life to be ‘just so’… and it’s just not… and for this very moment, I get just how much that hurts inside of him. I understand his tears and his frustrations and his outbursts. I get it.

The lightbulb comes on and I can see why it hurts so much to see him struggling to cope when things are out of his control. I too do not like this. I do not like seeing in him the very response I guess my inner-animal would like to unleash when I do not get my own way! My parents would be laughing at this.

In fact that goes part of the way for justifying how I feel about PDA. Sure I have comes to terms with the ASD diagnosis but I resent the PDA part most. It is about the furthest thing from my expectation of what being a mum would be like. No wonder I struggle. I’ve read blogs recently pulling apart parents who take the diagnosis and somehow ‘make it all about them’…I’ve pondered why this felt so uncomfortable? I guess, much like the point raised at the beginning, there is a chance that the very bold statements made by such bloggers could in fact irritate me perhaps because there are similarities I am uncomfortable exploring? Maybe I admire these writers? I’m generally quite good at staying upbeat but PDA really has become my topic to vent about so there’s a good chance that those sorts of blog posts are actually hitting a nerve reminding me of the mum I said I did not want to become (*pictures looking in a mirror).

However, I stand by my belief that we are allowed to feel and experience exactly whatever emotions we have at any given time and that to truly move through ‘it’, we have to first name it, explore it and accept it. We can be warriors if we like but must remember that language is powerful and sometimes we set ourselves up for the ‘fight’ or a ‘battle’ when instead it could be a ‘compromise’ or a ‘discussion’ etc.

I’m sure I share many other similarities with my son and his PDA characteristics; my desire for an ordered within ‘my control’ life jumps to the top of my mind! They are of course traits that many of us have, but those with PDA have them to the n’th degree. I wonder how many of you fellow parents of children with additional needs can identify with this? Do you notice the things they find difficult and feel uncomfortable as you too struggle with the very same thing?

If we can take these snippets of awareness and use them to channel a better level of understanding and empathy we may be able to connect on an improved level with them when they are in crisis/meltdown? I’m hoping to learn to stop myself when I realise my own frustrations about his negative behaviours and ask myself: Can I relate to what he is finding tough? How do I (or would I) behave when I experience this?

Modelling coping strategies has been successful in our house when trying to help pda’er to practice new skills. I always introduce anything ‘new’, as something that I wanted to try out for me. I’m thinking I need to speak out loud more often about things not meeting our expectations. I need to model just how those of us with (adult) rational capabilities can work through and overcome situations that do not meet out expectations. I also want to find examples where things exceed our expectations and model how this too can be comfortable and a pleasurable experience, as our little man struggles with this side of things too…. hmmm..Do I?

As ever, I will find my best bits from the day as I believe on focussing in on the bits that go well…

3 positives

  1.  The sun stayed out for another beautiful day
  2.  Mummagrizzlybear managed a park trip with the urchins and did not lose her shit in public
  3. Feeling on top of the work diary / home life / appointments / meetings balance – hurrah… * pour yourself that glass of wine … you know from the bottle you purchased for yourself for mothers day!! Ha! Keep smiling…confuse the buggers.

“Specialbilities”

#Autism Awareness
One journey to diagnosis

Mummagrizzlybear has wanted to join #Autism Awareness, which has been superbly promoted amongst fellow bloggers such as https://www.facebook.com/LotsofLoveandAffection , but I’ve been stumped on how and where to start writing about the journey to littlest baby bears diagnosis. That was until tonight when a tongue tied slip-up of my 9 year old cleverly invented the word ‘specialbilities’ and there it was…my title…my starting point…bringing in my 9 year old’s perspective.

Having first given birth to a virtual text book baby, it is easy to look back and account for why we thought it such a good idea to bring another creature into the world. A ‘sibling’ was top of the priority list. I’d not wanted an ‘only’ child.

Skip forward 20 weeks or so and at the routine scan Daddybear and I were confronted with our first hiccup. “Please don’t be alarmed but baby has some abnormalities”. Impossible to not be alarmed by that word. Fast forward a little more and we make visits to different hospitals and specialists who after many weeks of pure torture manage to put our minds at ease and come up with a plan about the future. The future at that point consisted of the ‘birth’ and the days that followed. The abnormalities were not as scary as the first few professionals had led us to believe – at one stage we’d been told there was ‘ambiguous genitalia’ and this later transpired to be an issue with the kidney and bladder. This little creation had caused mayhem and unchartered emotions all from inside the womb. I really should have known then that this journey was going to be bumpy.

An on schedule birth far quicker than anticipated brought our smallest-bear into the world and made our first born the big bruv. Littlest bruv was an ‘unsettled baby’. The months that followed probably appeared ‘normal’. Both children met milestones. Mummagrizzlybear started a diary the day she were prescribed anti-depressants. I remember the shock. I had no idea I had developed depression. Sure my babybears were a handful most of the time but they were lively, spirited and energetic and I was doing my best to provide the text book upbringing that produced facebook worthy family photographs! The eldest started school and this gained me the 1:1 time with the smallest that I’d never really had until then. I started noticing and comparing my time alone with him to what life had been like with my first child at this age. This babybear was different. Harder. My little challenge. We kept to the expectation and attended mum and toddler groups and birthday parties. We were still invited back then! Before starting preschool we’d picked up on little things such as a high tolerance of pain and an apparent lack of response to temperature. He was easily irritated and sleep was a problem.

By age 3 the GP had sympathetically referred us to a community paediatrician who had met with us to discuss our concerns and kept him on his caseload over the next year or so for reviews which were not regular or all that helpful. Preschool did not report seeing the same issues we experienced at home and confused by this we explored lots of ideas and possible medical explanations for the challenging behaviours we encountered. We also began to jump through the hoops of the professionals as the Paediatrician sign posted us to ‘parenting programmes’ despite us having another older child who responded appropriately to our ‘parenting’.  During our own search for answers and with the power of the internet at our fingertips mummagrizzlybear began researching. Speech and Language were referred to by the Paediatrician to explore the possibility of ASD traits, however they attended the school to meet our son and concluded very quickly that because he gave eye contact that it was an inappropriate referral. I’d worked with young adults with Autism and Aspergers and something didn’t ‘fit’ our son, so at this stage we didn’t feel it important to pursue this any further. He began to make progress at school and separately mummagrizzlybear had gained confidence and with therapy and a new focus i’d overcome the need for anti-depressants. However, my search continued. I felt there was an answer somewhere to explain the difficulties we had. Innocently and quite by accident, I came across ‘PDA’ (Pathalogical Demand Avoidance), a form of Autism, which was like reading a text book on our son. I remember reading it and crying. Daddybear cried too. Full of confidence I penned a letter to the Paediatrician, the health visiting team, the school and the GP explaining why we felt that this should be investigated further. PDA explained some of the Autism traits but also gave an explanation about the ‘surface level sociability’ and eye contact as well as giving an understanding about the difference between home and school behaviours. It was a relief to read that there could be an actual medical interpretation and less finger pointing about parenting capacity. The wind was quickly knocked from my sails as we faced the critical responses of professionals who did not like parents attempting to medically make assumptions about probable diagnosis. Every service at that point seemed intent on disproving our assumption. Within in months of being discharged from the paediatrician who coincidentally reported that PDA did not exist and was not recognised in this part of the country, mummagrizzlybear made a phone call to a support agency seeking advice about new presenting behaviours in school and how to go about getting support when there was no diagnosis. This call was handled by a friendly, warm lady, who listened and with limited details asked me tentatively if I had ever heard of a condition called ‘PDA’. We laughed and shared an understanding of each other’s circumstances as she revealed that her son now had this diagnosis and he had first been seen by the same paediatrician as we had just been discharged from. Recharged, I went back to the GP and requested that we be re-referred back to the community paediatrician. Secretly I hoped we would be lucky enough to get a different consultant this time around. At this stage we had a family worker supporting us due to the volatile nature of the behaviours at home. Things had peaked and it was evident that our son was not coping and that his mental health and well-being were being affected. He’d become more and more Jekyll and Hyde like and scared mummagrizzlybear with his threats to harm himself and others.

Here starts the waiting game. Our GP referral to the Community Paediatrician was ‘sifted’ and instead sent to the ASD Team for consideration. The ASD Team got in touch with us to request additional information and this prompted an effort for a collaborative approach from home and school. School now took the stance that they were ‘managing’ his behaviours and ‘coping’ without any extra intervention, however they agreed to support us in providing additional support to the ASD Team. A couple of months passed before we were notified that our sons referral had made it on the waiting list for assessment. I’d like to insert here feelings of relief but recall more distinctly the dread. The dread that we were potentially sitting on the wrong waiting list off the back of  our mere parental assumption about PDA. In the mean time the Family Worker had attempted to get him seen by CAMHS but this too had been sifted and ‘his case’ discussed at a Primary Mental Health consultation before concluding that as he was on the ASD waiting list he should not need to be seen by CAMHS. The ASD waiting list was 18 months and rising. During this time an acquaintance from the school gates who noticed the difficulties we were encountering (where other people turned a blind eye)  recommended a private Occupational Therapist who had recently supported her with her children who presented with some similar behaviours. With a little more research, we booked an appointment to meet with the OT, and reassured by her initial assessments, observations and our sons apparent trust and comfort when visiting her, we agreed to pay for a SIPT (a sensory integration assessment). In the months that followed we held in our hands a comprehensive document detailing from a sensory perspective why our son behaved the way he did. It included recommendations to support someone with sensory processing disorder and we assumed as it were a clinical document those suggestions would be observed in a multi-agency type approach. How very wrong we were. At times we were met with very unhelpful comments such as “you will get any diagnosis you want if you pay for it”.

Over the next 12 months we managed to get school to amend IEP’s to include a sensory diet and they began to enlist the support of specialist services to write behaviour plans. Various interventions were tested and reviewed. Briefly TAC meetings were held, but at that time the team around our child was very small. Our relationship with school began to break down as we felt they began to withhold information from us and often dismissed any issues we raised with responses like “we are managing his behaviour” and “he doesn’t meet the threshold for… (fill in the gaps)”. We met regularly and complied with the support plan expectation for us to work collaboratively, however nothing felt collaborative; it had become an ‘us vs them’ situation, where at home we had become more and more isolated and in school we fought for what was right for our son. By age 6 the school’s managing strategy included a Team Teach response of regularly restraining our son where de-escalation tactics were ineffective. His challenging behaviour increased and as parents we felt the school were failing to respond appropriately. They kept telling us that he would not meet the criteria for an EHCP, but without this, we didn’t seem able to force their hand to engage additional support to help him. Their efforts to ‘meet his needs’ were inconsistent and by age 7 it became apparent that he’d lost trust in the staff supporting him. Most scarily he started reporting incidents where the staff had hurt him. He began verbally expressing how scared he was of going to school and displayed more and more angry behaviour. Admittedly, he was a volatile child, unpredictable, capable of lashing out and behaving aggressively. He’d throw chairs. He’d learnt to swear. He’d refuse to engage and disrupt lessons. But this wasn’t all of him. He was bright. He loved maths. He was observant and caring. When ‘calm’ he was endearing; a right little charmer. As parents we knew his triggers and we supported school all we could to acknowledge and respond to these but their set-up just couldn’t bend enough to make things inclusive for him.

Less than a term into key stage 2, we were presented with a document that stated that one of the consequences that would now be applicable if he presented certain behaviours was for him to receive a fixed term exclusion. We argued this. Surely this was inevitable given that he presented those behaviours regularly and as the adults supporting him we had not been able to consistently identify triggers nor solutions or strategies to help him at those times. We had however reached the point where they were willing to refer to a private Educational Psychologist for additional guidance and by now we were aware that his ASD assessment was imminent. We hoped that the collaboratively they would support us with suggestions. The EP came but his visit was unsuccessful as our son refused to engage. No great shock considering his ‘fear’ of ‘new people’ and avoidance of most things -even things he loved doing! Then came the phone call. “We need you to collect your son; due to prolonged extremely challenging behaviour he has been excluded”. There’s scope for a whole blog to describe the weeks that followed this. It was awful. We’ve been massively let down by the ‘system’ and to cut a long story short, the school refused to take him back, claiming that there was nothing further they could do and that they could not keep him safe. Weeks later he went through the Autism Assessment process and was very quickly diagnosed with Autism with a PDA profile. We have no doubt that the school had intentionally ‘moved him on’ before this diagnosis had been reached. I firmly believe that the school did not have his best interests at heart when doing so and neglected some fundamental legal principles in taking this action, something which when I have enough energy to do so, I shall confront them on.

For a time he was without an education provision and we compromised our employment needing time off to care for him (and to pursue daily phone calls and emails to various local authority departments) before he was eventually secured a placement at an Alternative Provision Academy. It was a little too close to a horror movie for mummagrizzlybear watching her baby bear struggle with the change, the transitions, the scary behaviours of the other students and seeing his mental health deteriorate. We’d gone from ‘managing’ in mainstream to a whole new world and the unsettled period had resulted in an even more volatile son. He’d attempted to harm himself, continuously put himself at risk, had stopped sleeping, was experiencing significant anxiety and was hurting his family members. The ASD Team witnessed the urgency for CAMHS to also be involved and luckily for us within 6 weeks of a diagnosis with one team we were also meeting with a Psychiatrist. The ASD/PDA diagnosis had not been a shock but was still uncomfortable to get your head around. We have taken the approach of wanting our children to be experts in understanding the diagnosis and shared things with them openly. I truly believe that ignorance is a far bigger disability than Autism and that so many children (and adults) have such varying additional needs that we should not allow ourselves or our children to somehow negatively stereotype such people. The Psychiatrist prescribed anti-psychotic medication for the perceived ‘intrusive thoughts’ that were likely to be exasperating his anxiety attributed to the PDA. The apprehension we felt about administering the medication was a challenge but we have gone along with things, hopeful that the benefits will outweigh the negative side effects. We are now at a place where an EHCP has been applied for. His temporary education placement will ‘keep him’ for a term or two more and support services are beginning to come out of the wood-work. He is nearly 8 and each day throws up new challenges. We are tired and wounded, and at times we feel we are failing but we are resilient (you have to be) and creative about coping strategies. We are warriors with invisible armour. We are a team.

I’ve mostly removed emotion rom our story. Probably subconsciously saving this from becoming an extensive rant about the crap we have gone through to reach the point of diagnosis. Equally, if I allow myself too much time to reflect over just how bad things have been over the past 4 months in particular, I may well jump off the nearest cliff or onto the next plane out of here.

Living with specialbilities has its plus points. We are constantly learning. Our house is a sensory haven. We view the world through fresh eyes. We have a new appreciation for the small things – minor victories that other ‘normal’ families overlook. We’ve expanded our support network with people who understand and we’ve filtered out the more unhelpful, judgemental ‘friends’. We have learnt how to monitor and take care of our well-being, practicing self-care and being less critical when we have ‘down moments’. We make the most of the little extras like a ‘free carer’ perk or a ‘queue jump’ ticket and no longer feel ashamed or guilty for doing so. We know how to ask for help and have learnt to reach out to others who may need our help also. We can voice our needs and manage the balance of home life, work life and the special needs jungle of appointments and meetings. Our children know how to talk about different needs and are supportive of other children they meet who face challenges. We have many a moment where we crack or crumble but we are a family who have learnt the importance of communicating our struggles and overcoming them together. We have not been beaten thus far and that’s because as a family we have specialbilities.  Acceptance is key.

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