PDA and ‘Sleep boxes’

Some recommendations for night time anxiety that might be worth a try if sleep feels like a distant memory!
Even with meds we had not achieved at night what was necessary for us to all healthily function the next day.

Attending a scope ‘sleep workshop’ was not the highest thing on a list of priorities for mummagrizzlybear but having begged for support and having exhausted all ideas I’d been able to graple hold of, I was faced with the workshop prospect. Daddybear exempt himself from this joy and so the delight was all mine. Sarcasm got me so far. My work-head told me to tune in and be as open minded as possible. Sure, I’d ask my clients to be open to the possibility of learning new things, so a dose of my own medicine was required. 

My doubts included the fact that, 

a)  I am an intelligent, competent mother who understands the value of a ‘night time routine’, so what could a workshop hope to teach me?

b) Nothing ‘text book’ had so far been successful for my PDA son and I did not have the strength or energy (through lack of sleep!) to sit through hours of explaining to professionals the complexities of my child 

However, we were beyond sleep deprived and I’d kind of already dismissed the advice of the autism support team about creating a sleep tool box, foolishly believing they had misjudged my son for someone who might be compliant and up for trying these things! So with little options left I took myself along to the workshop. At his worst babybear was fighting going to sleep until about 11pm and then waking hourly screaming and extremely distressed until finally ‘getting up’ for the day anytime from 4am.

The first thing I recall that sticks with me is just how tired we all looked. The reality of meeting other intelligent competent parents also failing in the ‘getting your child to sleep department’ and immediately I felt more relaxed, and a little less of a failure. We yawned our way through pleasantries and fuelled ourselves on coffee and most in the room couldn’t afford to stay for the full session as we all had children with complex needs and various other appointments/meetings and duties to attend to each and every waking moment!

The next thing that stuck was that night waking was ‘normal’. We learnt about a neurotypical persons sleep cycle and it was at this point I could see how close to waking each of us are every night on many occasions. We learnt more about the stages of sleep  and I acknowledged that I had misunderstood the stage of sleep where we dream, falsely believing this to be when we were in deep sleep. The sleep cycle offered me some insight into the times of night that my son was waking and from here I could see that the issue was less about the ‘waking’ and more about the inability to resettle himself and self soothe. On reflection he struggled to self soothe as a baby.

Routines were something I understood the importance of. I had a son on the Autism spectrum so we were familiar with routines. So much so that I often rebelled against them, resenting the rigidity it sometimes felt that we lived by. Nevertheless the night time routine was predictable and familiar and in much the same way so was the unhelpful coping strategies we had developed. You see, I’d learnt that he would not self soothe and settle off to sleep each night so I had a routine method for handling this. I was aware that it wasn’t helping him learn a better way of coping but it felt like the only option and the only way 4 members of a household would achieve some rest. Just as one could be advised to implement a new routine or a change to an already established routine, we were able to reflect over the changes that were necessary so that our son could become more independent and settled at night. And just like most parenting blunders, the biggest change was going to start with us and our behavior.

I also learnt about sleep diaries and was given a format to use. I’d kept diaries for weeks at a time previously. In fact I smirk whenever I open an old notebook as I find over the years I’ve kept many such a diary….turns out this little issue we were dealing with was history repeating itself time and time again. He’d regularly struggled to sleep and then had periods where he mastered it before swiftly returning to being the devil child who would not rest! But my sleep diaries did not offer a ‘pattern’ or an issue that could be pin pointed. More often than not they just diarised my despair! Along with sleep diary advice we were taught about the hours of sleep required by each age group and how this differed for children like my son on the spectrum. In addition we received guidance about how long it should take anyone to get off to sleep after a night time routine… 15 minutes!? (Allow 30 mins for children with additional needs) Even my biggest lad could piss about for up to an hour after ‘lights out’ and the advice from scope was that I was putting him to bed too early! I learnt the things to record about our night time battles so that we could begin to implement changes.

Over the years, I’d been given countless books on sleep success strategies, i’d tried every ‘trick’ in the book and at this point we were fortunately through the door with CAMHS and receiving a Psychiatrists support, guidance and prescription power. Our own GP had suggested Phenergan and other antihistamine alternatives leading up to this point, but nothing had improved the predicament. Along with the Risperidone (antipsychotic meds to alleviate some of the anger outbursts) babybear had been prescribed a form of melatonin (circadin) to assist the body in its natural sleep inducing chemicals. Mummagrizzlybear had hoped this would be the miracle cure. Both meds offered some benefits, both assisting with him being in a ‘calmer’ state at bedtime and on the lucky occasions they’d help him to pass out around the socially acceptable hour for a lad of his age. However, as others had warned me, melatonin can have a reduced effect after about 3 – 4 hours, and babybear (despite getting off to sleep) continued to have night wakings. He might get off to sleep between 8 or 9pm with the medication, so you could pretty much set your watch by his first stirring somewhere around 11pm and once the waking had started it was at least every 2 hours and finished off with an early rising somewhere between 5 and 6am. Even with meds we had not achieved at night what was necessary for us to all healthily function the next day.

So I returned from the workshop armed with knowledge and a determination to resolve this. However diarising our problems and making alterations to the routine by changing bedtimes and removing the unhelpful coping strategies would not be sufficient in my book; my PDA’er needs a more hands-on, in control type of motivation. I knew I had to introduce better ways to manage and role model the new expectations. Fortunately babybear has his very literal way of interpreting language. I can say “we must not scream in the middle of the night” and he can process this; but to act upon it I have to also give him an alternative solution. “At night if you wake you can … ” and there was my opening to introduce the idea of the sleep box.

Every child will respond differently to new ideas. Trust that you know your child best. For families living with PDA find the tactic that works today. On this occassion I used the tact of collaboration, humour and mild nonchalance. I introduced the idea that I’d ‘been on this course and had some suggestions about how we could all sleep better and that I’d also been shown how to make a sleep toolbox (slight white lie) but it was really only something I could do with his help, and it might ‘suck’, but hey we wouldn’t know how rubbish an idea it might be unless we gave it a go’. I then retreated and looked too busy to complete this task whilst also cleverly stumbling across a box we could have used if we were going to be bothered to make such a toolbox. It worked. Babybear was interested. “So what can we put in the box?” He asks. Again knowing his likely response if I became too eager I casually name dropped the sorts of things I’d put in if I were making one. Rule of thumb is that the contents should be anything you are willing to allow them to do during the middle of the night that might assist them in maintaining or returning to a calm state. Most of the items were mutually selected and we talked about the reason they might be helpful and examples of what we could do with each item. I’d already decided that iPads and noisy items were going to be a no-no. He’d fully play that sleep box to his advantage otherwise and I’d already worked hard to ensure technology had been removed at least an hour prior to the night time routine to minimize the ‘screen effect’ impacting on the sleep issues!

Into his box went the following:

  • A torch (he has a lamp in his bed already but a torch added a sense of security)
  • Mummagrizzlybears teddy (my most sacred childhood possession to demonstrate a giving of myself)
  • A clock (so he can satisfy his obsession about ‘time’, without needing to scream out ‘can I get up yet’)
  • His ‘worry monster’ (a teddy he can post notes into to help him shift on his worries – he has only ever ‘used’ it once and I forgot to empty out the worry but nevertheless he wanted it in there)
  • 3 of his most precious collectible items (his narnia figures with the agreement they could be played with quietly should he wake)
  • A photo album of him as a baby (looking at himself can occupy him for hours)
  • A picture of mum, dad and brother (in an effort to replace our physical presence)
  • His stretchy body sock (a sensory tool that makes him feel safe and secure)
  • A note pad and pencil (for writing down anything he needs to tell me or to put a worry in his worry monster)
  • A reading book (with the agreement he can have his lamp on to read if he wakes)
  • An aromatherapy sleep spray

I suggested we could decorate the box but for baby bear that was a step too far and he almost gave the box the big heave-ho having noticed that he’d unwittingly conformed! We moved on and made little of the box until bedtime when I got baby bear to tell daddybear all about it. Sounding in charge, he took to it like a dream and placed his box of goodies on the end of his bed. The routine changes needed some gradual delicacy. 

Daddybear and I had taken to lying with babybear each night after his meds and storytime until he eventually fell asleep. We had to alter this and the adjustment took some time. We began by NOT getting into bed with him. Instead we placed a chair in the room to read stories from. We then began by retreating from the room agreeing to check in on him in 10 mins. Some nights I took my shower after his story time just so he could hear me upstairs with him. We stuck to the plan and checked in on him, each time we found him to be awake we gently reminded him about his box and what he was allowed to do should he wake in the night. We also reiterated what we would like him not to do. The demand avoidance may well be accountable for his reluctance to actually use the box but interestingly he would not agree to moving the box from his bed to a shelf… It had to stay put!

The same night we introduced the box I also started using the new sleep diary format. After the first week what it showed was that his actual ‘sleeping hours’ were within the normal range for a child of his age. This was news. I’d convinced myself he just didn’t sleep! I was so tired and focused on the ‘waking’ I’d forgotten to log his actual sleeping periods. In that first week he’d woken in the night and instead of screaming the house down, he’d tiptoed in to wake me. In shock, I almost caved and cuddled him in to my bed but instead I returned him calmly to his bed and provided him with items from his box. On these wakings, it required us to repeat the “I’ll check on you in 10 mins” routine which was hard to endure but worth it. Seeing it through confirmed we were trustworthy and also reliable with the boundaries. All of this I believe has helped to reduce his night time anxiety. What we were doing before was unintentionally fuelling his fears by only confirming that he felt safe when he had us with him.

For 4 weeks I kept the diaries. We did not give in. We stuck to the plan. Each morning I was reassured that even if there had been night wakings he’d still achieved a ‘healthy’ amount of sleep. Each day we reinforced just how pleased we were and baby bear learnt to feel pride for achieving the goal of ‘quietly staying in his bed’. We had successfully shifted the focus from ‘going to sleep’ or ‘not screaming’ to something more positive and plausible. 

We had always believed that a dependent use of sleep meds could be counter productive in the long run and once life had become a tad calmer and everyone was getting more rest, we began to reduce the regularity of the melatonin. We choose to communicate very honestly with our son about meds and explained it to him that if he took them every night there was a chance that they could become ineffective. So on nights when it wasn’t essential that he got off to sleep, like on weekends we could try and go without. Then over time we tried every other week night and before we knew it, he was managing without on more nights than he needed it. On rare occassions where he was particularly distressed at bedtime he would be offered it. Its been well over a month now since he has used melatonin at night

I’m not certain which came first. The chicken or the egg? Did the sleep box reduce his anxiety or was it the changes to the routine that improved his confidence and ability to self soothe. Like any new skill or sport, to become efficient, one must practice practice practice. We too had to rehearse the more helpful strategies to become more familiar with them. Collaboratively we have introduced a new approach to the challenge of sleep and in doing so we have strengthened our resilience, improved our well being and developed a sense of reassurance and hope. Change can happen at any time. We can choose it to be so. You must first decide that you are willing to change and committed to it. 

PDA Sibling resentment

He’s my neurotypical kiddy and with this comes some unnecessary added pressure. I want so much for him. I expect so much from him. But I am so so thankful for him

My eldest son and bigger bruv to PDA’er is an amazing boy. He’s often only referred to in my blog when I am referencing an issue I am working on with littlest babybear and it is this that I have been reflecting over for some weeks now. Firstly let me point out that, it is not that I have overlooked him altogether and by no means have I not been attending to his needs as a little lad but I have come to recognise that he has a tiny frame but has unwittingly become a young man. A young man who has through no choice of his own had to develop broad shoulders in the metaphorical sense as puberty has not yet allowed him to physically do so. He has in the past six months witnessed trauma and emotional breakdown of the people closest to him. He has been scared and vulnerable and at times alone with nobody available to attend to him and he’s felt responsibility that he shouldn’t have. He’s been let down. 

I am not writing this blog to berate myself nor encourage others to do so, I am merely acknowledging that whilst our PDA’er has struggled in recent months and I’ve been very aware of the impact this has had on us as his parents, I have not been in the optimum place to deal with the fact that this too has had an impact on bigger bruv.

He’s been a bigger bruv for 8 years. That part is not new. And much like other elder siblings, there are some parts of acquiring  a brother that didn’t sit well with him, such as having to share and learning to tolerate that another smaller being would now occupy a lot of mummagrizzlybear’s attention. It’s true too, that we have bundles of happy memories of brotherhood and being a family unit of four. Mostly we work. We are a good team. That said, he has encountered traumatic events that have changed him. They’d change anyone. As an adult needing to continue to function, I had to file those traumatic experiences and work through them at a safe time. I tended to bigger bruvs immediate reaction to the trauma with metaphorical plasters, to cover up the wounds, hoping that with time, he’d heal and through good old childhood resilience, he’d bounce back. He’d been amazing through so much so far, it hadn’t crossed my mind that he wouldn’t overcome this just as smoothly.

That’s the thing about my biggest baby bear, he’s always been smooth. As a newborn he was pretty text book and made becoming a parent a joy. He affectionately attached to me in his early years and much like boys do, he then looked up to his role model of daddybear.  He sailed through his preschool years and demonstrated his much loved sociability and obvious sense of self. He knows what he likes and developed a early sense of independence which I encouraged. In primary he found the value of his peers and I believe he is right on track in terms of his development. He’s driving me potty, pushing boundaries and becoming a pre-teen before my eyes. All normal stuff. But we have an added skeleton in the cupboard. I call it resentment. He terms it differently. He’s desperate to feel ‘normal’ and blames babybear for him not being so. He’s stuck on this diagnosis of his brothers and seems incapable at the moment of accepting it. He understands it. He gets it. If anything, he’s a ruddy expert on it, but in his eyes this makes him anything but normal. 

Resentment eats any of us up, much like any negative emotion carried for too long. It’s only function is to keep us low. I am not for one second disregarding where this resentment may have come from. Like I said, I know what he has seen and I accept that there is probably a whole load of stuff that I have missed in terms of what it has been like from his perspective. I don’t want to rake up the horrible stuff but to give this some context, bigger bruv has at times been physically assaulted by babybear, beyond the ordinary realms of sibling play fighting. He’s witnessed his parents be physically attacked. He’s watched as we’ve clutched hold of baby bear attempting to throw himself from upstairs windows in the middle of meltdowns. He’s physically intervened when a knife was being used as a weapon. He’s been the one to call for help when mummagrizzlybear has been hurt. He’s watched as his brother has been restrained and injured by staff in a school. He’s been the one sat in school wondering where it is that his brother has been sent. He gives in when he can see a meltdown about to ensue. He walks away when he wishes he could stay and argue.  He has had to learn to take care of himself because let’s face it, at times I just haven’t  been available to do it for him. Anyone would experience resentment right?

Take tuesday this week for instance. An unexpected meltdown was upon us prior to the school runs. Despite my best efforts I was sucked in and dealing with babybear who needed significant support to get out the door to his taxi for school. Flustered I turned my attention to my biggest babybear, who just like any 9 year old boy has a habit at the moment of not focusing on the things that need doing before school and instead being consumed by gaming or messaging a mate. But not Tuesday.  He’d sussed out what was needed. He had my back. He’d packed his lunch, he’d gathered his things, brushed his teeth and had his shoes on and was patiently awaiting his lift to school and as I walked back in the door delivered a very well timed gentle hug and dash of humour by summing up the morning with ‘well that was tricky for him wasn’t it mum’. What a bloody star. He’s learnt not just what has to be done on a practical level, but also how to offer appropriate emotional responses of support and all at the same time as learning to understand PDA, the triggers, the meltdowns and the best approaches to living with this condition. 

I’m quick to clamp down on him and feel like I’m always on his back. He’s my neurotypical kiddy and with this comes some unnecessary added pressure. I want so much for him. I expect so much from him. But I am so so thankful for him. I tell him often, but he rejects me, mostly, because it’s so uncool but also because he’s angry with me. He won’t say it in so many words but all behaviour is communicating something. He kicks off with me because in his eyes, I am the one who has let him down. I was the one too busy dealing with babybear. I was the one pushing him to one side, expecting him to know better, begging him to support me and make life easier. I am who he is angry with and I get it. He has his moments with daddybear but he still holds him in this light that says he must be some kind of god. He aspires to be like daddybear. Who wouldn’t? Daddybear gets to leave for work far more often than I do!

And so we have a resentful sibling. I’m not implying all siblings in similar situations will definitely feel the same, but it’s worth considering just what they put up with, above and beyond the role of ‘normal’ big bruv stuff. I’m guilty of complaining that he always has a habit of pushing babybears buttons. He knows his triggers and can be a right wind up. However I’m equally guilty of not intervening when babybear is behaving in a way that I know frustrates bigger bruv. Bigger bruv gets embarrassed. I’ve seen him pretend he is not with us when babybear is kicking off publicly. We have to carefully time opportunities where bigger bruv can have friends over and on one occasion a parent actually declined a sleep over invite for fear that her son would not be safe at our house and my eldest has to deal with this too. Forgiving his misdemeanours is easy when I can create a list as long as my arm about all the wonderful things he does, and mostly he does this for his bruv. Sure, sometimes it’s for an easy life or simply because there doesn’t seem like there is any other option but for that I shall always respect him for being an amazingly caring young man, whether he’s willing to acknowledge that he is a young-carer or not.

My amazing little trouper has finally been able to talk about the scary things that are stuck in his head (I suspect this will lead us to the route of his resentment). He’s engaging with support workers and opening up. He’s been referred for some specialist support to help him overcome some of the scary things that have gone on. At some stage I hope we will be offered support together to rebuild the trust and reinforce the love and gratitude I have for him. I work on this daily without support but like anything emotionally charged with our kids it’s not easy. I’m aware that it can become manipulative in the sense that as I feel guilt, I could let him walk all over me and get away with things by means of compensating. But I’m not like that. I’ll show my love and respect for him by my maintaining of boundaries and he will push and push to see if I’ll crack. I hate upsetting him. It’s hard to discipline a child that you know is acting out as a result of things I should have protected him from. But I focus on the man he might become. Right now I have an angry child who needs reassurance, love and to know where he stands. I can only hope that I can support him to once again feel safe and taken care of. He’s in a place right now, where he perceives this as over protectedness and strictness. Which makes me wonder how we will survive the teenage years! Haha. Bottom line is, I will not give up. I will get him the specialist support he might need just as I have for babybear. I’ve learnt a great deal about my capabilities as a mum over the recent months and I’ve re-evaluated  my priorities. Working less, I had said, was about being available to care for babybear but in actual fact it has also been about ensuring I am not so tired and strained and therefore having nothing left to give to biggest bruv! This has set me free from my feelings of resentment about having to give up some of my work.

Biggest bruv and I have more in common than I first realised. This gives me hope. I’m often told that I have an amazing appproach to parenting our little PDA’er but my eldest is amazing with him too. His fears and anxieties are similar to the things that run through my head. He once asked me “mum, will I have him forever?” And I recall sniggering to myself that it had crossed my mind that I too may have babybear with me far longer than a ‘normal’ parent anticipates when you start planning babies! I laugh too at the amount of times I refer to ‘normal’ families, much like the aspiration my eldest has…. to just be normal. If I have learnt to accept and adjust I believe others can too, including mr resentful. He will grow. All shit experiences provide a learning opportunity. I’ve learnt just how much harder I need to work on my eldest feeling safe so that he doesn’t ask us to pack him off to boarding school, again anytime soon! Any of us can implement change at anytime. We have found time to fit in much needed one to one time. We have written a safety plan of action. We will keep talking and learning and growing. 

I hope one day he will read this blog and know just how proud I am of the young man he has become. He is a comfort to babybear that I could never replace. He is funny and witty and amazingly brave. He’s outspoken but giving and a passionate friend. He’s loyal and loving and fiercely driven. He’s going to encounter his fair share of mischief as he just can’t help being involved but he’s already capable of such mature reflection that I’ve no doubt he will become one of life’s best ‘learn from the consequences’ candidates. He is a carer there’s no doubt about it. He’s forgiving and compassionate with a firey side reminding me he’ll always be a huge asset to our family team. I couldn’t love him more if I tried. Even when I’m mad!

Top tips if you find yourself with a resentful sibling, might include, 

  • making time for each other, each day, find even just ten minutes that is reserved just for them
  • keep talking, despite a disgruntled pre teen response, keeping at it, shows you are committed
  • respect what they might be finding difficult, it could be similar to the things you find just as tough 
  • Listen, even if it doesn’t make sense to you
  • Engage specialist support to help demonstrate that we can all reach out for support 
  • Empathise. As parents we didn’t choose to become carers but neither did the sibling.
  • Teach appropriate ways to express anger and frustration
  • Manintain healthy boundaries and model respectful behaviour
  • Recognise, reward and be thankful for the ‘good stuff’, the stuff that went well instead of giving focus to the bits that go wrong
  • Factor in respite for the siblings too. Time when they can see mates or family without their sibling
  • Reinforce positive relations as often as possible, hep them see why they love one another
  • Reflect over the ‘positives’ that having a sibling with a disability brings (fast track at theme parks!?)
  • Be open about how hard you experience things sometimes so as to help normalise the tricky feelings
  • Encourage diplomacy, no matter how hard things are nobody should be subjected to burden or blame
  • In the face of challenging behaviour, love harder. Give that last ounce of energy you have to seeing the world through their eyes.
  • Laugh together, enjoy each other, bring happiness in the moments you steal together.

A brief insight into our PDAday. Exclusions and accomplishments.

 It will not have helped him to develop the skills he needs to manage more appropriately when he returns to school. 

I’m in the sun on a half hour break that I’ve manufactured into what should have been my ‘day off’ this week. Its beautiful weather and I could be gleefully sunbathing whilst the babybears are at school (or getting on top of the housework – but self care is vital) however I have smallest babybear home on another exclusion period.

Exclusions for someone like him do 2 things. 

1) unsettle his routine and 2) provide great evidence for the ultimate solution to wanting to avoid ordinary tasks.

He knows why he is home. But that will have very little impact. It will not have helped him to develop the skills he needs to manage more appropriately when he returns to school. 

The days/hours I should have spent restocking my resolve and patience have instead been spent attempting to facilitate some periods of academic focus on literacy and maths. (Which believe me is not just as simple as inventing a task you’d like him try to complete.) Then carefully managing a timetable for him that will fill in the gaps in his routine lost through exclusion. He finds it actually painful to just ‘be’. He cannot ‘entertain himself’ nor imaginatively conjure up ‘things to do’. His demand avoidant profile pattern of behaviours are heightened due to the disruption in his routine so mummagrizzlybear suggestions are of course rejected. It is not straightforward. I refuse exclusion periods to be spent lost in a ipad-shut-off mode and he accepts and understands the ‘no iPad during school hours’ rule.  But this means I have to work hard to be a lot of things to my son; mum, carer, teacher, friend, play mate to name just a few.

*Blogging interrupted by demand for mummagrizzlybear to stick to the drawn up Schedule*

Rigid routines go against the grain for my ‘day off’ but here I am bound by a timer and a list 😩. Since lunch which was scheduled for 12.15 just like school, we have had individual play time (30 mins) which I had to stand my ground to get on the list as he hates alone time and finds it hard, then game time together (30 mins) then computer time (30 mins) followed by ‘cooking’/ evening meal preparation (20 mins), snack time, before some telly time (my window to finish blogging). This morning we’ve done English, Maths, water play and climbing before we had a visit from our SCIP Worker who had to leave promptly as scheduled despite us having not finished talking!

During ‘English’ we did some work on talking about Anger. Mummagrizzlybear used some of his favorite cartoon characters to try and open up conversations about how other people cope when they feel big emotions.

 

Trouble was his literal rigid brain found it hard to imagine anything other than what he has watched. Pikachu for example would ‘fight back in a battle to win’ and in Narnia ‘the goodies have to kill the white witch’…nevertheless I slogged on, helping him to think more flexibly, although I could see he didn’t agree that ‘talking to friends’ was likely to be a response neither he nor any narnian would opt for over fighting when worried or angry! Still, planting seeds, has to be better than ignoring the fact that he doesn’t currently have many helpful strategies for coping when ‘angry’ and therefore gets excluded. The task itself provided useful material to work on as he raged mid first sentence, angered by the frustration he gets when writing and internally battling his demand avoidance. He stormed out of the house, screamed and growled once he returned and shredded the work he had started. I used this to look at what had ‘helped’ and we used the scrunched up shredded paper as a tool to move forwards. Before each sentence or at each new frustration he could scrunch this paper and/or get the same release squeezing his stress balloon ball we made last week. It worked. As the task went on, he became more fluent with getting his ideas from his head to the page and with gentle support and reassurance he followed the written instructions. I was able to refrain from too much verbal guidance which reduced the stress of the demand upon him. Overall, we had a positive result and he identified that paper could be used by ‘Brain’ who was wound up and angered by ‘pinky’ and that pikachu could go for help at the hospital instead of fighting when ‘hurt’. The Narnuan, Beaver could talk to his friends when he was worried about the witch and Harry Potter could seek comfort from his pet.

Can babybear translate any of this to his own life I wonder? 

My current fear is that the answer may well be ‘no’. I’m reading a Jodi Picoult novel at the moment called House Rules, a story of a lad with aspergers, its early days but I know that the story is about him being accused of murder, but my mum assures me that despite the sadness she felt reading the similarities this lad shares with my babybear that its a safe read for me. I hope that means he didn’t do it. I got choked today on a chapter describing this lads prom and a the work the mum puts into him being able to achieve this milestone in his adolescence. She employs a social skills coach twice weekly and together they support him to work through his anxieties and social awkwardness but its still tinged with sadness as he cannot divert from his rigid routines and slides into the backseat of the car instead of alongside his date in the front. 

Babybear returns to school tomorrow after his 2 days reprieve. I’m newly anxious and extra tired owing to my additional emotional workload these past couple of days and tomorrow I’m back to work. Im full of question’s at the moment. 

Will these next few remaining weeks of term pan out OK? Will we ever suitably prepare him for the forthcoming transition? Can daddybear and I survive if things take a turn for the worst again? Will I ever get round to tending to (let alone blogging about) bigger bruvs current battles? Will our summer hols have to be this structured? Will the dragon of a Head from his base school miraculously appear at his next TAC and will I cope if she does?

I’m conscious that we have achieved a lot so far today and I’ve earnt my parenting stripes but I’m aware that it is this very day to day workload that can wear us thin on resolve and make us poorly equipped to manage a fresh hurdle  … So bigger bruv had best come home less volatile that’s all I can say!

I’ll be back…when the schedule allows!

‘Running away’ from PDA

I’ll never quit but I do have to tag out here n there

Im tired. This is more a diary entry that I hope I will learn something from in the future when I will no doubt look back and read my old posts like I have the others.

One full week back from my little respite getaway (https://mummagrizzlybear.wordpress.com/2017/06/30/r-e-s-p-i-t-e-find-out-what-it-means-to-me/?preview=true )

…and we’ve survived a bumpy road to the babybear turning 8… Read my post on birthdays to gain an understanding of just how hard this time of year can be. https://mummagrizzlybear.wordpress.com/2017/06/07/pda-presents-and-surprises/?preview=true 

Summed up by his wish that ‘birthdays should be the same day as Christmas so it can all be over at once’ and this makes me so sad for him 😢. But I digress. We have survived. We even enjoyed parts of it and he mastered the skill of appropriate responses to gifts AND was affectionate and verbally thankful without prompting!! 

But today he’s been excluded again; partly a culmination of last weeks bumpy behavior and the icing on the cake today cementing his fate. He’s relatively unphased by this fact. He agreed it was a ‘fair’ sanction. He still feels justified in his actions though. Oh my little rigid thinker! So I’m faced with the ‘how do I deal with this dilemma’ once more. School feel that the exclusion is as much a break for him from the volatile environment as it is a punishment. They’d like me to help him regulate again before he returns. This makes my blood boil. I love the team at the school and we are a million times more supported where he is currently than we were before… But…I can help him regulate til the cows come home but when he’s out of my care, someone else has to step in. Its something he just can’t do for himself (yet) and although I carefully manage his environment to reduce anxiety provoking triggers at home, I cannot be responsible for this whilst he’s at school. Its my biggest disability. I wish I could protect him and support him each moment he needs me. But he has to grow. 

To compound the stress I was feeling, I’m behind on some work, its the wrong time of the month and bigger bruv decided today was a great day to kick off too. He’d already had a grounding over the weekend and had ‘lost’ his phone privledge but today he went for round 2, unleashing a load of verbal abuse when I said ‘no’ to something he wanted. Gee whiz.. I was so unprepared for what was coming out of his mouth and so short on patience from having dealt with babybear exclusion saga that I just cried. I just burst. It probably saved me from unleashing angrymummabear who would have beat herself up no end if she had resorted to an old fashioned smacked arse for being so disrespectful. So there I am. Cooking tea and sobbing my heart out. Fresh with really unhelpful thoughts about being an inadequate parent who has delinquent children! 

Part of my work involves teaching others to challenge their negative thoughts…so I crack on applying my more rational side and prepare dinner for the babybears setting aside daddybears and mine to share when he returns from his hard day at work. I remind myself that one parenting blip doesn’t have to become a whole parenting chapter on fails and engage the kids in conversation over dinner and insist that we go for a fun family dog walk when daddybear gets in.

Queue daddybear (later than expected) who waltzes in oblivious to mummagrizzlybears tear stained cheeks and announces that he’s going back out soon so if I wanted a family dog walk we would have to skip dinner. Ffs. Deep breaths. Queue kids kicking off rejecting lovely dog walk. Mummagrizzlybear pulls rank and with huffing n puffing both children are in welly boots and dogs are on leads. Daddybear hikes off with babybear now doing his best impression of being the least likely child to be excluded for violence and bigger bruv lags behind confirming the delinquent status and subsequently the family dog walk starts out as quite a staggered and separated family walk. Half way round the field, 2 members are heading off virtually out of view and I’m losing my cool with bigger bruv who has randomly developed the worst leg pain ever in an attempt for my attention. I’ve humoured him. Cajoled him and nurtured him, but he won’t let up. All I can think is that I’d needed to talk to daddybear about the exclusion, the plans for re jigging our lives whilst he’s off and importantly that I very urgently needed some self care me time if I were going to be home alone on excluded duties over the coming days. But daddybear is miles ahead and bigger bruv is still moaning, my report for work is now definitely late and its the wrong time of the month for heavens sake! 

I turn on my heel and RUN. 

Biggerbruv yells come back mum. But I just keep going, I picture driving away. I reach home flustered and because my car is trapped in by the work van I dart up the stairs, throw on my running clothes, grab my headphones and I’m back out the door and off the estate without them clocking me from the fields. I know daddybear wants to go out but I don’t care. I’m fit to burst and I run. I needed it. Spotify plays me ironic songs about relationships clinging on by their fingernails and I head for the horizon. About a mile in, the horizon doesn’t feel far enough away, the landscape feels like its closing in and I’m conscious that I feel panic. Breathing through it and lost in another tune which makes me smirk I’m at the top of the hill. I’m calmer. More rational and already sure that I will go back. Promising myself I’d only be half an hour, I’d return refreshed and daddybear could still head out. Come on Eileen gets me back up the hill home and I’m greeted by ‘I thought you’d gone forever mummy’. 

Sweaty , I attempt to clear the air with daddybear who is evidently miffed and obviously completely unaware of my teetering on the edge moment. I bring him into the picture and we begin to talk but then he drops in that he’s too busy to attend the autism course tomorrow even if I could find someone to watch the littlest. Mummagrizzlybear is hurt. His priorities suck in my eyes. Its week 4of4 and he’s made it to none thus far. I bleat out that it was never about ‘learning new things and more about showing me some support’ and head for the shower to sob some more. Somewhere mid shower he shouted ‘see ya later’.

Kids tucked up, I take wine to the office to attempt my now very late report but get sidetracked phoning family members, crying and running my husband down…

Queue daddybear returning. He looks softer. He’s calm. He offers a genuine ‘are you alright’ before telling me he’d been thinking and he’ll be with me tomorrow and his dad can have babybear. It takes me a moment to soften too; a wounded mummagrizzlybear can hold a grudge, but I relented and we talked as he leant into the office and I still avoided my report.

Its now just gone midnight, report complete, house quiet, wine glass empty and a little ache in my legs reminds me that today I chose to run away. Dramatic maybe but the anger boiling inside me motivated me back into self care and not self destruct. My kids were worried but probably less so than had I have taken the car. Daddybear and I have survived and hes even read the handouts from the sessions he’d missed of the course. 

PDA and the parenting shenanigans associated with it are tiring. Bigger bruv is all too often met by a mum who is already short on patience as babybear sucks up all of it. Relationships are strained and just every now and then I want to run the fuck away. Then my rational  thoughts kick in and I remind myself that I’m no quitter (grandaddybear reminded me if this tonight). I’ll never quit but I do have to tag out here n there. Running away with a plan to return is OK…even if it takes the first mile to plan the returning bit!

“R E S P I T E … find out what it means to me”

“You cannot pour from an empty jug”

…A short period of relief from something difficult or unpleasant

The dictionary gives Mummagrizzlybear this definition as she tries to establish if she has had a holiday or taken respite? What the dictionary does not offer is guidance on the ‘hows’ and ‘whys’ of respite and whilst I was sat on the beach on the last morning of my break last Sunday this is what I contemplated most.

When I had children, I anticipated the odd occassion here and there where spoiling grandparents would want to whisk my babybears off me to have their special time with my little cherubs. I’d call those a ‘night off’ or ‘date night’ with daddybear. Heck we might even build up to a ‘dirty weekend’ but I’d never considered those breaks becomig respite. Because innocently the word had never been something i’d connected with parenting. Sure as parents, you’d reach out for help or support but not respite. Respite was something different. It wasn’t until earlier this year that I officially embraced being a carer as well as a parent. Mostly because I’d neglected to be made aware that with a child with a disability there also came this new title; and with this new title, a whole new level of expected roles that i’d fulfill. In recent months I’ve even had to resign from half of my beloved job to facilitate being that parent-carer and the truth is I have resented having to do this. That said, mummagrizzlybear can see light at the end of the tunnel (she whispers this in her head only to avoid tempting fate) and since becoming a less over stretched parent-carer, life seems to be falling into a bit more of a manageable routine. But shit, the last 6 months have been tough and on more than one occassion I’ve had random encounters with the word ‘respite’, ranging from advice that ‘I need it’ to information about how ‘I do not qualify for help towards it’.

Months ago, friends invited us out to Spain (kid-free) to celebrate a 30th. Even back then, I know in my head somewhere I wondered who would take over the parenting role for us but we were in a good place and excited by the prospect of saying yes. Fast forward a few months and in contrast we were then in the midst of the worst period of our lives. Babybear was critically vulnerable and we were enduring trauma as a family. We were broken. Emotionally exhausted and we had lost hope. We’d given up on any chance of holidaying. I couldn’t see how I could leave my boys. They needed me. Daddybear and I had sat in each others arms crying, sad that we had no idea if the future would get better, scared that we had lost any aspirations for our baby bear and fearful that we might not survive the stress. I was giving everything I had in every area I could. Ironically at work I started delivering a course on self care and it was this that forced me to reflect on our capacity to continue to pour from empty jugs. We needed to refill. Health professionals, support workers and family alike were pointing this out to us but we didn’t know how to achieve this. 

“You cannot pour from an empty jug”

Queue grandaddybear. I’m a massive daddy’s girl and he’d been a rock to me, checking in on me, phoning for no reason, remembering to scoop me up whenever he could and reassure me that I’d get through this. On hearing we had the offer of a cheap getaway he made it simple. “Book the flights, I’ll book it off work”. No questions. No hesitations. Just GO. 

Skip on and months later we were kid-free in an airport choked by a mixture of anxiety and excitement. My brain was racing with panic. Had I left enough ‘to-do’ lists? Written enough notes? Would grandaddybear survive? Will the kids resent us? We were all in a far more stable place and some of that I credit to the optimism that booking this trip brought about. 

This brings me to the HOWs

R ealise that you require this for you and your children’s benefit

E mbrace the idea and look forward to it

S ource the support you need to be able to get away

P repare the stand in caregiver because you’ll feel better by having done so

I nvite them to stay with you before you go, let them see the stuff you do that you just can’t describe

T rust that they’ve got this covered. Let go of the reigns

E scape. Just go. 

Daddybear and I enjoyed 4 days of Spanish sunshine, copious amounts of alcohol and time with no agenda. We relaxed, walked and talked, slept when we needed to, ate when we wanted to, stayed up late and laughed like we’d not laughed for years. We reconnected as a couple and found ourselves as individuals again. We were fortunate to be in fab family company who understood just how tough things had been and just how important this break was. They helped us relax and giggle and this combination for me led me to pee my pants!!! Oh the shame!

On our last sunny day I sat alone with my coffee on the sand with the sound of the sea typing out a version of this blog, attempting to justify why we needed respite. After an hour of typing away I accidentally deleted the blog, something which would usually push me over the edge in frustration. But not that day. I could let it go. Sure I was gutted but I was so refreshed and rested that I felt able to overcome anything.

And now for the WHYs

R est to refresh yourself

E xcitement to bring back your spark

S tress reliever

P reventative measure against mental health and stress related issues

I nsight into just what is possible, who you are aside from a parent-carer and just how well your kids can cope without you

T ime for yourself. Taking care of you is just as important as the care you give to others

E nergise your mind, body and spirit ready for returning to your caring role

Whether you believe we have holidayed or had respite is neither here nor there. We arrived home and hit the ground running, straight back to the ups and downs of ordinary parenting combined with the complexities of parenting a child with PDA. Grandaddybear gained an up to date insight into our parenting world and told us he doesn’t know how we do it. They all survived but I’ve no doubt he needed a rest! We cannot thank him enough, we are so grateful. One week home and we are reminded of how tiring our reality can be but we’ve had our pick me up so we know we can plough on.

*ironically, this blog post has crashed on me 4 times in its creation and each time I’ve tried to re type it I’m certain I’ve forgotten a really good point I meant to raise…if its shown me something, its that resilience and patience can be restored from a little self care.

#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.