The power of ‘deep breaths’

I met a lady this week who scoffed the advice, of taking deep breaths and doing something ‘nice’. Right at this time she just couldn’t see, just how empowering self-care can turn out to be.


I saw the tiredness in your eyes, the tears you hold back and are trying to hide. I see you struggling and at your wits end, I know the pain and the strife my friend.

We are told a ‘label’ will not change a thing, we will still have the challenges our child brings. Professionals grind you down and destroy self esteem, ignoring our plight is not supportive, it’s mean.

Whilst you wait in a queue of an extensive list, keep track of the things some professionals miss. Prepare for your meetings assertively, watch out for those trying to dodge accountability.

Find out your rights and strive for what’s best, i’m afraid at this stage you just cannot rest. This however means that you must work hard, taking care of yourself will be your trump card.

I met a lady this week who scoffed the advice, of taking deep breaths and doing something ‘nice’. Right at this time she just couldn’t see, just how empowering self-care can turn out to be.

Dealing with challenging kiddos is rough, and many a moment you’ll feel ‘that’s enough!’ Learning to work on your own stress and anxiety, prepares a stronger character for the next day, someone with resolve and flexibility.

Getting your sleep, developing your strength, helps us all to increase our resilience. A glass of Gin or making the time for a bath on our own, are some self-care tasks that I’m proud to own.

Recognising our responsibility, to take care of oneself is not selfish you see. Improving your mental health and focusing on well-being, reduces the risks and can give parenting new meaning.

Understanding that ‘change’ will start with YOU, each day a fresh start to try out something new. List out your goals and then like at a gym, work out how to achieve them and let support in.

Reach out to people who comprehend, where you are now and the things you want to end. Keep your circle small, trusting those who share in your plight, you’ll need encouragement and positivity if you are to win this fight.

Each day task yourself with a ‘positive’ to find, something you love or achieved or deed you saw that was kind. Open your awareness to the joys of a day, a blue sky, a fresh breeze or something good coming your way.

Reject pessimism, the ‘doom’ and doubts, take charge of your thoughts, push the gloom out. Remind yourself just how much you’ve already survived, picture your goal up ahead and then onwards you strive.

Taking deep breaths sounds too simple to you, when I heard this I thought “if only you knew”. Our world was so different just 12 months ago, but ‘defeated’ didn’t help and this I now know.

Empowered and confident that I do know best, brought changes unimaginable into our nest. Learning to breathe and take time for myself to heal, gave me back my hope, aspirations and opened doors to the things I wanted to ‘feel’.

You too can combat the rut that you’re in, just recognise first that you are prepared to ‘win’. Baby steps first, make small changes first, if you trip or fall, get up and plod on and not wallow in hurt.

So much of this ‘battle’ starts in our heads, as we end each day recounting failures and tomorrow’s dreads. Reprogramming our brains is power and key, to change things, we first must choose to! Trust me.

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. 

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 ( )

…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. 

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.

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 your support network…talk about it…ask for help.