‘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.

Mumma do the hump

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

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

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

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

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

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

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

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

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

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

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

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

Today I felt proud when…

Today I enjoyed…

Today I achieved…

Here’s my self esteem journal for ideas

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

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

Step one, start a self esteem journal,

Step two, Turning negatives into positives

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

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

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

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

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

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

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

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

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

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

did that link work?!

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

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

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

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

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

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

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

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

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

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

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

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

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