PDA, Exclusions and “but did you die?”

Some days are sent to test us

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I’ve just ordered my copy of ‘but did you die’ hoping to emerge myself in sarcasm and surround myself with reassurance that other parents are just winging it.

https://m.facebook.com/story.php?story_fbid=1449279778465944&substory_index=0&id=1028395850554341 

Today, a Monday, a back to school after a very long weekend kind of day. It’s a work day and happens to be the day before daddybears bday. I’m behind on purchasing presents as I had the hump and refused to buy him presents whilst I was fuming at him. I’m behind on my work admin because I had to dash off from work to ensure I had suitable gifts wrapped from his precious  babybears. On arriving home it turned into one of those ‘can you frickin believe it’ days. Three phone calls cemented that fate. The first a 27minute on hold kind of call to the council to be told the same bollocks I was told a month previous…that nobody had looked at the paperwork yet. The delightful lady today chortled that a disability reduction to the council tax doesn’t even make that much difference so i needn’t get too stressed. She’s not been waiting for 3 months  nor is she getting by without carers allowance or amended tax credits since having to halve her salary to care for her child but hey…lets not get stressed. While I’m on hold with this call pda’er babybear returns home in his taxi and stomping through the door shouts “is that school on the phone?” In his rather gruff mood I clock that he’s anticipating school will want to speak to me. I get the briefest of moments after my council tax call to find out his perspective on his day before the teacher calls. His version is often short but normally accurate. “I’m bruised” he says, showing me his hand. “I got it hitting Tyler “. What he neglected to tell me was that there were 4 members of staff attempting to prevent this occurring, one of which received a flying kick to her stomach and it was this that today the head teacher would be excluding him for. The teacher went on to explain he’d had a pretty vile  day with lots of foul language. Mummagrizzlybear is listening intently to the teachers account of the events; numb, sad and a tad embarrassed . There is little one can say. He is already in an alternative provision due to his outbursts in mainstream. The staff here get him and won’t hold it against him. They even explain that they don’t think he can help it and didn’t feel he’d even remember hurting the member of staff as it had been in rage and in her words “he’d lost it” when it was happening. Nevertheless, PDA or not, this was not how I envisaged parenting. I know how to raise decent kids. My kids know that it’s not acceptable to treat anybody this way. I’m riddled with the niggling automatic thoughts that this teacher, like so many professionals before her, somehow suspects that this is learned behaviour. I ask her advice on how the school would like this handled. Should I be cross? Or sympathetic? Why do I even feel both conflicting feelings at once? Excluding him as a consequence for his actions is understandable but when everyone involved agrees that these sorts of behaviours may be out of his control, I become fearful about the future. He knows right from wrong. In fact he’s the rule master of others but in the heat of the moment he fails to apply rules or reason to himself. He feels justified in his actions. After all, the other kid antogonised him by spitting at him. As ever babybear was simply taking matters into his own hands. 

The call ends and I call babybear to me. He knows what I’m gonna say. He becomes distressed instantaneously and retreats outdoors, picking up a rock to launch at me and coupling it with a beautifully loud and clear “f*ck off” for all the neighbours to hear. He’s for once furious that he will have to miss tomorrow’s outing with school and I realise that just maybe on this occasion the consequence will have some impact. For the rock and cursing I’m determined he will spend some time out in his room (I’m more fuming that he dared to speak to me this way than i am that hes excluded). Ripping up any paperwork nearby and a convenient stash of cardboard he eventually takes his strop to his room and sussing out that he will not get my attention (no matter how destructive he becomes) he complies and lays on his giant beanbag to ‘calm’…. queue the phone ringing!

Call number 3 would you believe it was bigger bruv bears school reporting he’d been in a fight. Ffs! It transpires he has been considered as the one on the defensive side and not at fault but nevertheless he’s had a punch to the face. Once again im a bit numb. Questioning where I’m going wrong? Why have I got the kids who are getting into mischief? Have I cocked up? I can’t help but wonder whether he was the antagonist or whether it was a proper punch?! What kind of grizzly mumma thinks that?! I’m not always the best with sympathy. The ‘did you die’ approach probably best sums up my nurturing level at times and I’ve been known to mutter  “that’ll learn ya” when I see them fall where I’d told them to stop etc! Some of this I’m told is normal parenting of boys. Indeed daddybears attitude to most scrapes is ‘well they’re boys’. But they are my boys too and my aspirations were for them to grow into decent young men.

Amidst all of this I’m reflecting. Searching for the positivity that will save my self worth and morale. I’ve spent all my work day delivering a session on core beliefs and self esteem to a vulnerable client group. The upside of this work is that i’m regularly in a position where I can help others pull a positive out of an otherwise shit situation. On the whole, I can usually apply this to myself too. 

Today’s positives seem to be that babybear seemed bothered by an exclusion and although distressed he actually complied and used his safe space to calm. He also went on to have a reasonable conversation with me about alternatives ways to manage his anger and wrote a very short sorry note to the teacher he’d hurt. Bigger bruv came out of school seemingly unphased and spoke very maturely about the lad who had hit him. The birthday presents are wrapped and we’ve sorted childcare for the excluded toad tomorrow. Daddybear is in the garden erecting the climbing frame he’s not been available to build for weeks because of work. 

That said, no amount of optimism, positive self talk or frickin fantastic self esteem will save any of us from the onslaught of testing children. PDA’er is currently on round 3 of trashing his room post bedtime routine because he’s ‘too hot’ and seems determined to jump on my very last nerve. Bigger bruv is tucked up in bed with a growl and a snarl owing to his utter cheek and disrespectful behaviour towards me. 

In the mirror I look calm. Inside I feel irritable but its like my body no longer knows a useful way to display it. Perhaps it came out in my parenting fails at bedtime. Perhaps I was sent a shitty bedtime with each of them to afford me the chance to vent how fed up I am that they’ve let me down. It’s not everyday, but set-backs really throw me. You have to work ruddy hard to compose yourself again and bounce back. But I will. Even when I’ve had my blips and not handled things the way I’d like. Every now and again humour will help. Some days if i didn’t laugh, i’d crack up. 

We will survive this exclusion and use the experience as an opportunity to talk and learn with our little PDA’er. 

We will support bigger bruv to ensure he knows we are proud of him for not retaliating at school. 

It’s now half bloody 9 at night and I’ve blogged instead of getting my neglected work admin done… duty calls…. or is it the new Amazon purchase?! Queen of procrastination during stressful times!

Some days are sent to test us… but i didn’t die!

PDA, presents and surprises!

he’d rather go without than be disappointed or let down in terms of his expectations not being met

Mummagrizzlybear is contemplating how to approach the bi-annual headache of gifting ones precious little baby bear  (pda’er) on his birthday and wondering if other mums have to do this?

Babybear has always struggled with birthdays and Xmas. For a long time I just didn’t get it. We first noticed his dislike of attention. He hated everyone looking at him and actively avoided things like participating in plays at school, however we were reassured by teachers who told us that many children don’t like to be on stage. Then we clocked how he’d avoid answering direct questions about preference and in actual fact just pose more questions to questions . I could ask “would you like sauce in your bacon roll?” And he’d say “do I usually?” Couple these with his unusual response to praise, his ultimate need for control and his compulsion to avoid anything new and you might be able to picture the quandary I am in. But none of us I’m guessing can comprehend the internal pain and difficulties this causes my soon to be 8 year old.

Each day I’m asked by someone else ‘any ideas for his bday?’ Each day I’m wondering how to ‘manage’ the day itself. In previous years I’ve been known to accidentally on purpose book a short trip away that falls on his bday so as to safely remove him from the pressure of a large family wishing to adorn him with gifts that  they anticipate will elicit a delighted ‘thank you’ but more often than not caused a meltdown.  

Freshly scarred by a traumatic last Christmas I’m seriously scared by the prospect of marking his birthday this year. Christmas was just too much for him to handle this year as Santa didn’t see it appropriate to re-buy the same gifts he brought the year previous… that’d be stupid right? WRONG. PDA’er wanted an iPad. Not because he hasn’t got an iPad but because that is what he enjoyed getting the year before. He knew he didn’t need an iPad and I’m certain he knew he would not get an iPad, however with every gift he unwrapped you could feel the tension rising. Queue a few inappropriate gifts sent by well meaning relatives who do not know him well enough and he flew off the handle spouting obscenities about the ridiculous ‘baby’ presents he’d been sent and pointless TV Santa had seen for fit to replace his iPad request with! To the untrained eye, this is the ultimate ‘ungrateful little bugger syndrome’ but to us it is the culmination of the anxiety and pressure put on someone who cannot bare to not have things a certain way. Someone who’s expectations are led by experiences and when not fulfilled send him into extreme panic…because different is scary; new is scary. This is someone who struggles daily to participate in the normal socially acceptable pleasantries and exchanges between people on a good day and so you are mad if you are imagining that at the peak of anxiety he’ll muster an appropriate response when he is faced with the scary uncertainty of a wrapped box or worse the unwrapped revelation that it’s not what you hoped it would be!

I promise you he’s not ungrateful nor greedy. In fact he’ll ask for ‘nothing’ because that’s easier for him to bare. He’s generous in his capacity to give to others but struggles massively to receive. He’ll not even accept the offer of a biscuit from a box of he hasn’t first seen it (to inspect it) and second ‘had one like it before’ (to assure him that he likes it). He has sadly learnt that he’d rather go without than be disappointed or let down in terms of his expectations not being met. (Interestingly this is the very point I could never communicate clearly enough to professionals who’d tell me that he’d eat x y or z if I persisted and was consistent…. no he ruddy well won’t… he will cut his nose off but not through sheer stubbornness; it’s more about fear. Fear of the unknown.)

Tactics tried and tested for successful gifting include :

  • giving gifts in a low key manner
  • Planting a seed about what you think the gift might be (but first you actually HAVE to know what it is)
  • Giving combined gifts so that the pressure isn’t solely on him – a ‘share with your brother Xmas pressie’ for example
  • Making suggestions about gifts for practical reasons and practically giving away any chance of surprises
  • No significant surprises allowed at all…. small scale surprises can be tolerated but not the big stuff…thats too much to handle
  • Minimal questioning about wish lists etc , instead subtly make that list each time they mention something random throughout the year
  • Remember ‘small’ gets just as happy response if not better response because it’s less pressure to like a 5quid item than it is to show gratitude for 100quid blown.
  • If there is a specific request which is achievable get them in on the buying process to eradicate possibility of it still being ‘wrong’
  • Remember it’s ‘us’ that want him to like a surprise and completely unreasonable to expect him to learn to like uncertainty.
  • Come up with enough ideas for relatives so they don’t buy  random stuff that ‘normal’ kids his age would like
  • Reduce pressure by allowing gifts to be opened early or late, in private or in company; be led by his mood in any given situation
  • Indirect reminders about socially acceptable responses for when we are given gifts… even gifts we don’t need/want or like! 
  • Talk about exchange options
  • Prepare loving gift-givers for the possibility of the ‘wrong reaction’
  • Remember that gifts dismissed on one day have  been known to become favourite toys a month later
  • Gift things you’ve seen them play with at other people’s places or respond to on the tv etc… familiarity is key

I’m a big believer that if you keep facing the same difficulty it is because you have not yet learnt the lesson intended. Life will keep throwing you the chance to learn the very thing you need to absorb until you do. I know I have not yet learnt what life needs me to know about giving presents to my PDA son… I know this…because I still find it difficult. He finds it difficult to manage himself when receiving gifts and has not yet learnt how to cope with the ‘unknown’…so life will keep throwing the unknown in front of him. 

Remembering I have a responsibility to manage myself also. To keep a lid on my desire to spoil him. To treat him. To surprise him. I must remember that to him this can be torture. Fresh to the top of my memory bank is his reaction when I surprised him with (and filmed for my continual torture) “we’re going to disney” from our campsite in france… *moans* ” but I’ll miss this place; I like if here”. He loved Disney as much as he’d found he could love the campsite which coincidentally he didn’t want to go to either. ‘New’ is scary and I can’t make that better. But i can facilitate safe and positive exposure to ‘new things’ to help build up resilience and tolerance. 

When I chose to have kids…the last thing I thought I’d be stuck on was how to give them a gift! 

PDA changes our lives everyday…. and on a ‘good’ day I might even be brave enough to tell you it changes us for the *better! 

* on a bad day, I’m like any other mummagrizzlybear reaching for a vino bitching in her head about the injustice of parenting being so bloody hard!

Mumma do the hump

Each day fuelling the next. It’s a magnet. A shit magnet. A mental filter that prevents us from acknowledging the positives

It’s another of those fantabulous times of year where baby bears are released from their school duties and their lovely structured routines and set instead on their multi-tasking, over tired, mega stretched parents, who in their fantasy head ‘look forward’ to beautiful quality family time but in reality find something quite different. If your household includes any form of additional need added to the mix I’m guessing it’s not all plain sailing and you too may be disheartened by the neurotypical family shots splattered all over Facebook that do not appear to have required expletives or bribes to capture a wonderful family moment!

(Disclaimer… I completely get that a) neurotypical families have their fair share of shit parenting moments and sibling issues and b) I am not, in any way, distinguishing between working parents and homemakers… full time mumma house bears (with children with special needs or otherwise)… I take my hat off to you and finally c) I love my kids and have no intention of selling them/ running away despite how the rest of this may read!)

Mummagrizzlybear has the task of entertaining brother bears who complain if one another breathes near them, who would happily spend continuous hours staring at screens (turning them into hypersensitive hulks), who wish to take the world and their son on any suggested outing (who’d wanna spend time with just a mum?) and who would much rather it if daddybear were the one home with them this glorious afternoon. Plus did I mention, they moan and fall out A LOT! Fortunately  (apparently) my work load has reduced owing to my resignation from half my contract to be available more as a carer to youngest baby bear. Something i’m still in resentful mode about, more so as there isnt any sight of carers allowance coming through to relieve the financial blow… But anyways I’m available 7.5 days out of the 9 they are home on this particular occasion.

I’ve been watching my own well-being for some weeks and unwittingly noticing the waves of emotions of other friends and relatives too. My word I connect with some like-minded women and man can we do the ‘hump!’

The face sometimes gives it away. It’s that resting Bitch face I’ve spoken of before but slapped with a wet kipper for good measure. It says ‘go on, I dare ya, push me once more’. Any other adult can see it. They get it. Some (the good) offer wine and sympathy. Then there’s the sigh. That sigh you try and inhale so the precious  baby bears don’t actually detect that you are this close to losing your shit altogether. The sigh when your offerings are rejected or the carefully planned trip turns into another scene from some horror movie or the baby bear moans the fateful ‘I’m bored’ just one more time or worst of all the babybears behaviour mortifies you in public. The face and the sigh… great indicators of the impending hump. (There’s others, the ‘is it wine o clock yet mum’, the ‘go and ask your father’ mum,  the ‘if i have to tell you one more time’ mum to name but a few…and I’d love to know your hump indicators!)

It’s the impact of the hump that got  me thinking…how do we recover? Or even avoid it? Why is it so powerful?

Likely outcome in mummagrizzlybear house can include; being shitty with the daddybear on his return from work, lack of desire to prepare anything spectacular for tea, grouchyness with babybears and feeling mighty shit about my parenting blunders of the day, massively reflecting over my life choices and errors along the way, silently ignoring the spouse once babybears are banished to their beds, hours wasted staring at a screen looking for solutions and torturing myself with happy pictures from other well rounded successful mumma’s and lastly going to bed with no real fresh perspective, a shit nights sleep and waking to start round whatever we are on today.

So I’ve concluded. The hump, although inevitable, warranted and justified, is unhelpful. Unhelpful to my well-being, my babybears  and my husband and it’s a perpetuating cycle. Each day fuelling the next. It’s a magnet. A shit magnet. A mental filter that prevents us from acknowledging the positives or even noticing them at all. There lies it’s power.

‘Disqualifying the positives’ in CBT language describribes one of the unhelpful thinking errors that we often make. It’s non-discriminative. Anyone can develop these thinking errors. Many of us live with them unknowingly. Or unaware at least that we can take control back and reshape our thinking. With effort. With time. We can work towards a more rational thinking style and learn to appreciate, notice and focus in on the positives instead of dismissing them.

Now… if you have reached this point thinking ‘but in my life there simply are no positives’ you’ll be pleased to know you are not alone in this thinking but that this too is an example of an unhelpful thought; a negative automatic thought or NAT (for anyone wanting to research more on CBT… start with NATs). Perhaps nobody has ever helped you to focus in on the small stuff. The bits that we take for granted (or our children/partners may do). The parts of our day we could celebrate or rejoice in or feel proud about. Perhaps this concept is new to you. It might feel strange. To praise oneself? Surely that’s self indulgent? However, if you are a mumma (who does or does not do the hump!) Or a daddybear for that matter, teaching yourself this skill is important. Important to your well-being but doubly important to your babybears as you model to them just how to appreciate, recognise and be proud of accomplishments no matter how big or small, completing goals and feeling positive.

Top quick tip is to throw yourself into this… grab a piece of paper and start penning yourself a list of 3 things each day that you can feel good about…

Today I felt proud when…

Today I enjoyed…

Today I achieved…

Here’s my self esteem journal for ideas

So, you still might be thinking, ‘some days I don’t accomplish anything’ but on those days if I were to share that I’ve been known to write ‘today I accomplished getting dressed’ and ‘I had a positive experience when I managed to wash and put the dishes away in the same day’ and lastly ‘ something I did positive today for someone was NOT murder the kids’… you can see how you can start small and work up to bigger things to feel good about. I’d emphasize though that the beauty from this comes from being pleased with yourself for the small stuff. If every time you completed a chore someone thanked you and reminded you how appreciated you are, you’d start to feel pretty loved and noticed. We can do this for ourselves. Equally if we celebrate what the universe throws our way it’s far easier to feel good about the weather; it’s sunny, I’m enjoying the warmth; it’s wet, I’m watering my garden that I love to sit in when it’s hot. The traffic jam is a welcome chance to enjoy more songs on the radio or take same deep breaths and ‘me’ time; the early rising kiddies means we can fit more into a day, my babybears 765th argument today prompted me to reach out for 10 minutes of help and I’m proud that I did!…etc etc… even mumma having the hump brought about time to reflect and more importantly to stop procrastinating over what to blog about! 

Most people I share this with struggle most with allowing themselves to feel proud. I ask parents to then list the things they are proud of their children for…then hold up the mirror and help them see how they have facilitated in those triumphs and just how they too deserve to feel proud. Remember, you can start small. I’ve been proud of myself for committing to my journal/ having an early night/ finishing a course/ speaking my mind…its so varied!

Step one, start a self esteem journal,

Step two, Turning negatives into positives

Step three, pass it on, recommend it, share it, help someone else, ask your kids to do it.

Practising this, will inevitably help your self awareness grow, increase the likelihood of you being able to reframe negative unhelpful thinking and will hopefully help you ground yourself enough allowing you to recharge in preparation for another day of hurdles. 

Half terms and holidays can be mummagrizzlybear’s biggest challenge but that in itself opens up heaps to feel proud about… cos lets face it, another day has passed and 2 x babybears are still alive and I’m currently sat in the sun drinking just one small, very civilised glass of vino and not being hurled off to the nut house….just yet!

Let me know how you get on. And if you need help, tap into the #virtualvillage (see my previous post https://mummagrizzlybear.wordpress.com/2017/05/17/jumping-on-the-solidaritea-bandwagon-and-expanding-my-virtualvillage-support-network/?preview=trueof your support network…talk about it…ask for help.

Jumping on the #solidaritea bandwagon and expanding my #virtualvillage support network

Saluting those who were slated for being bloody awesome and highlighting the benefits of the virtual support network so many of us connect with

I started blogging as a therapeutic means for offloading. I follow other bloggers; some who share my passions and some who I may never have connected with if it were not for the wonderful world wide web. I have laughed and cried reading and sharing in their journeys. Before blogging, I felt lost and alone in my thoughts and overwhelmed by isolation. These feelings, it dawns on me, could be brought about by a whole manner of life experiences, not just my circumstances. So, wow, there are millions of people world wide needing a place to be heard and wanting a way to connect with people who ‘get them’ and their plight.

Whether you know exactly how you want to come across or whether you know exactly who you want your audience to be or whether you intend to be funny, ironic, emotional, honest or any other creation of yourself and whether you are a realist or a fantasist and whether or not you are technomologically minded (yep that’s a word now); your blog, is your blog. Yes it is potentially ‘out there’ for all to see, but it is yours and nobody, so far as I know, has the right to tell you what the bloody hell to do with it. Man, if this is the only space in your life where this fact is true, than even more credence to you. Sure, we open ourselves up to comments and critique; but that in my book is a conversation starter and i’m all for communication!

I’ll keep this short. I refuse to name the media source that is getting so much publicity for slating the ‘slummy mummys’ blogs but I was overjoyed this morning to clock the revolution. I love a good healthy battle! #solidaitea … now I’m not pretending that I am ‘up’ on how to use hash tags nor how to link other people/blogs to this post… but… I am doing my bit, my way, to salute those that were knocked for doing what I consider to be an amazing job! Go you lot. What a great come back! (If I were in the least bit aware of how to copy the link to the facebook post I am referring to…it would be inserted here… anyone who does read this and wants to teach me…please do get in touch! Lol)

https://www.facebook.com/hurrahforgin/?hc_ref=PAGES_TIMELINE

did that link work?!

As it happens, the slating of a fish finger tea amongst other things was the topic of my morning conversation with my 9 year old. Who…for the record…doesn’t even like fish fingers and as a rule, tends to have packed lunches for school… but guess what tomorrow is… it’s only a ruddy special school dinner day … this time the scam to get as many kids as possible to have school dinners on the day I assume the government takes some sort of stats and figures about how many children they feed hot school meals to, is beautifully entitled CORNISH FISHING INDUSTRY CELEBRATION LUNCH… otherwise known as fish fingers and chips! And of course my non fish finger eating poppet ‘needs’ to be in on this. I mean, who’d want to miss out on that!?

So fellow bloggers who rallied together to bring about that sense of #solidaritea, if our education settings can do it and call it a celebration nonetheless, perhaps certain media sources should spend less time attempting to bully and shame hardworking, life supports like yourselves and instead look at the real world that we live in!

Only yesterday, a day that allowed me to be a little braver than usual #PDAday, (a topic that I am passionate about because of my babybears disability), I connected with thousands of people quite unexpectedly. I’m new to this and it was overwhelming in a positive way to see that other people just like me, benefit from reading each others stories and just like me, have felt isolated and lost.

Long ago, I was told by a parenting whizz of a relative, that, a child could not be raised by its parents alone…it would take a whole village to raise a child.  When your community is small (in our case because of exclusion/disability/judgements) then you need to reach out to a #virtualvillage for support. And when you do… it is AMAZING. Many of us are doing this already, it is that day and age where we connect with people who we may not have seen for months or years, we join social media groups online and communicate with people we have never met, we have access to a wealth of information online without ever having to ‘study’ as such and so we build our village, our network, our community. Sure it’s even better if you have the face to face kind too but even when we do, sometimes, unless they truly understand your plight/predicament it can be hard to connect properly and share honestly with them, and that is if you are successfully making enough time to be able to do so around whatever roles you are managing. So i’m all for expanding the #virtualvillage.

I met people yesterday who shared that they’d been so alone… we can all make a difference here. A ‘like’, a ‘comment’, a ‘tag’, a ‘share’.. it is so easy (ha…she says!) but in doing so, we let that other person know that they connected with us. We close the gap on isolation. We can welcome each other into our #virtualvillage .

Please do not be alone. Come and find me on facebook. I’m doing my best to work out how I keep that linked with my blog! https://www.facebook.com/mummagrizzlybear/

I’m certain, that there is a more official way to share these links but this is the only way I have sussed out… Some of my virtualvillage includes:

https://www.facebook.com/thepdasociety/?ref=br_rs

https://www.facebook.com/groups/pdauk/?ref=br_rs

https://www.facebook.com/hurrahforgin/

https://www.facebook.com/theunmumsymum/

https://www.facebook.com/hashtaglifewithboys/

There are hundreds of people, pages and groups that contribute to my support network. However I am slow but learning and seriously must get on with the pile of paperwork I need to give my attention for my sons EHCP! Normal life must resume.

 

 

#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!