Holding up the PDA- Mirror

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


Mummagrizzlybear found this observation a little bitter.

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

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

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

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

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

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

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

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

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

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

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

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

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

3 positives

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

Rarely #ordinary 

We are all so uniquely ordinary in our own rights

In the world of PDA and parenting you’d be forgiven the momentary wish for ‘ordinary’ but life is rarely that. 

Sure we all get accustomed to what #ordinary looks like but it’s hugely subjective and elicits fantasies of what we believe other people’s ordinary to be. Is it better? Is it calmer? These are my regular queries! They don’t serve any purpose except reminding me to focus on on the positives of our ordinary day/week/life no matter how different/absurd or  un-ordinary it may appear!

Mummagrizzlybear squeezes a great deal into her one day a week off to accomplish ‘ordinary’ things like shopping and house work and a girly catch up preferably with lunch and of course time to blog…


…Or time to multi-task (see previous post  https://mummagrizzlybear.wordpress.com/2017/03/21/sen-parental-multi-tasking-calls-for-recharging/) and  blog whilst fending off sibling battles, pleas for help with home work and juggling the evening meal prep with childcare needs before daddybear returns home to tag in & open a sharing bottle of wine… it is Friday after all… and its ordinary that after a week of juggling (not struggling) that we find a way to unwind.

Ordinary I’m sure. What is it like for adults who have not become parents? Or non SEN parents? What is ordinary Friday behaviour? I’m guilty of making assumptions about many other ‘ordinary’ ways of life. It’s not envy. It’s curiosity. It’s grounding to discover many others doing the same and many more doing things differently. We are all so uniquely ordinary in our own rights.

☆ 3 positives ☆

1) it’s Friday and that means the adult tag team can be in full force and parenting becomes a two man job

2) great friends invite us for drinks and they don’t blink an eye when we turn up in all our un-ordinary glory

3) the kids are playing a mini disco from the iPad, selecting tunes from Spotify and you tube…their eclectic taste is straight from mummagrizzlybear and the last 3 songs have been ‘dangerzone’ from top gun, black betty and summer of 69. Super taste in my book!


#Autism Awareness
One journey to diagnosis

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

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

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

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

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

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

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

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

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

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

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



SEN Parental Multi-tasking calls for recharging

multi-tasking (efficiently), first requires us to look after ourselves.

Many a parent are proficient in this skill and i’m not about to single out just the female sex on this front although daddybear in our house may need to practice this skill a little more to meet mummagrizzlybear’s standards for multi-tasking.

To begin with, multi-tasking (efficiently), first requires us to look after ourselves.

A typical day for mummagrizzlybear combines parenting two demanding babybears with very different needs (something I plan to devote an entire blog to in it’s own right), playing breakfast chef and chief lunch maker whilst tending to the doggy & dishing out suitable daddybear attention prior to him heading out for his long day at work all whilst remembering to frantically grab the ‘work’ essentials to see me through my day supporting my client caseload and delivering emotionally uplifting support groups. During this time of course I’ll receive the odd email and calls here and there that should not be given my attention during work hours but instead consume my breaks. Today’s were from the Autism support team, A Young carers support worker and the medical Secretary to my littlest man’s psychiatrist.

In amongst my work day I’ve recalled that I’ve still not managed to squeeze in the birthday shopping required to let a bestest pal know that I love her for her unwavering support she offers…doh… bday is tomorrow… queue a plan to ensure suitable present is purchased prior to school runs (work admin can wait til the kids are tucked up tonight – cos I’ve nothing else to do with my ‘free’ time honest!) Then once home with the babybears I squeeze in a quick friendly cuppa and catch up (literally just half hour) to ensure taking care of personal well-being is ticked off the to-do list. Then it’s a mad dash to the swim lessons amidst resolving sibling conflicts, an injured biggerbruv (who trapped his fingers in the wardrobe he was hiding in), managing the ‘I can’t leave the house PDA meltdown’ and quickly and rather unlovingly overcoming the ‘mummy I had an accident in my pants’ moment as we headed out the door! So I’ve made it. I now have a full 30 minutes where technically the kids are out of my hands and in the pool. I frantically send umpteen ‘work’ messages that I could have/should have sent earlier in the day. I’m plagued with guilty reminders that there are also various friends, relatives and companions who are neglected of my reply to their messages in recent weeks! I’m contemplating dinner that I haven’t prepared and toying with the idea of bringing back ‘iPad time’ on a week day just to ensure that I can prepare the evenings meal whilst the sprogs are entertained/babysat by a screen. Bugger. They’re lesson is over and I haven’t finished blogging. Crap….

…4 hours later…

Babybears tucked up *asleep* …check… all admin/work/adult responsibilities attended to…check… ok, blog time resumes.

My point, if I remember correctly was to somehow explore (rant over) the multi-tasking capabilities of parents with children with additional needs. I’m certain most parents feel pressure but I’m silently convinced that medals should be dished out to those SEN parents managing to make their lives look as though they are not just in order but also that they can fit in being a huge array of different roles to different people, from mumma to professional to nurse to cook to confidante to parent support and the list goes on. Not only this they are timetabling gurus capable of taking any given week and squeezing in another appointment or meeting (with a professional or service they’ve no doubt waited for months to become involved and offer help) whilst at the same time navigating all pick ups and drop offs accordingly (abandonment of sprogs is frowned upon even more so if child has additional needs) and convincing employers that they are still meeting all contractual obligations whilst not forgetting to be a frickin awesome life partner, friend and home-maker amongst other titles. Mummagrizzlybears’ calendars are marked by those appointments that you simply cannot turn down but quite frankly are not certain you can fit in. It is an art. It’s certainly a skill and it’s not for the faint hearted. If you are on a journey that has inevitably linked you in with ‘services’ and if you have been that parent ‘asking for help’ then my goodness you better be available when the help starts being offered. And then you must be available once more to chase up the ‘help’ you were offered, because it does not just keep to it’s word and deliver. And then you must be available to research and fight for what’s right because although ‘help’ is out there if they can move people on from their caseload they will. And then you must be available for the unexpected. And then you must be available for the unplanned. And then you must be available to be tired. To be ill. To be stretched too thin. To have time to recuperate. To take time to repair. To find time to adjust…

… To look after ourselves…

Each new day, regardless of how many thankless tasks face you, must start and end with looking after OURSELVES.

We cannot pour from an empty jug and each of us would be quick enough to find a charger if the battery were about to die.

Recharge. Multi-tasking eats up your battery. You cannot recharge without first plugging yourself in. Talking about recharging will not being the phone back to full-battery. Planning to ‘charge up later’ means that you cannot be connected with until you have recharged. Avoiding recharging further incapacitates you and those who rely upon you.

Recharge. Look after you.

☆ 3 positives ☆

1) I set myself targets today that I have stuck to and ticked off

2) planning/ calendars/ appointments/ work schedule all in order with a couple of gaps for the ‘unexpected’

3) recharging activities prepared for after blog time




The power of positive self talk …

Parenting at the best of times can be an uphill struggle and overwhelming for many reasons. Throw in a mix of sibling rivalry, parental financial concerns and a dose of PDA- professional involvement (or lack of for some) and the ‘normal’ uphill struggle can quickly become a phenomenal mountain – one which you keep slipping back down and then must re-climb the very bit that you mastered or overcome the day previous!

Negativity is in abundance and acts like a magnet. One slip-up attracts another. One blip gives way to the next. Working on our own individual mindset is mission enough and all too often parents raising children with SEN and disabilities also have to encounter frequent judgemental opinions of other families, professionals attempting to filter out those who do not fit their service and relentless form filling designed to focus in on identifying ‘problems’. All of this added on to the usual negativity of life’s stresses could arguably be sufficient evidence to predict how so many families end up with poor mental health, crushed confidence and depleted self esteem. Are you tired, emotionally exhausted and at times feeling helpless and hopeless? If you are then you may be able to empathise with much of mummagrizzlybears posts. I am mummagrizzlybear and I am determined to share some positivity amongst an isolated community of parents who suffer unsupported at the hands of professional systems that let them and their children down.

My personal well-being has been on a rollercoaster ride in recent months. I’ve experienced depression in previous years and have more recently encountered panic attacks, which shook my world more than the postnatal depression ever did. I’ve journeyed through antidepressants and various therapies over the years to reach a point where I no longer use medication to survive and am able to just about live as opposed to exist and on most occassions manage to create the right balance between home and work too. I am privileged to work in an arena that constantly allows me to support others into a more empowered position. We work on confidence and self esteem and self care. It is this very work that I believe has rescued me over the past few months. I have been able to apply tools (without even noticing that this is what I was doing at times) and overcome issues that otherwise may have sent me to the top of a cliff. How? Well it may sound patronising but I firmly believe we have more control and choice in life than we ever give ourselves credit for. We can choose to let negativity take a grip or we can choose to let it be an experience that we acknowledge and then let it go.

I’ll give you an example. 

Yesterday I received a copy of a referral written by a very unsupportive head teacher and senco of the school from which my son was excluded from months ago. I’ve awaited this paperwork with trepidation. I had unconsciously decided that reading this paperwork would be hard. I’d attached my previous negative experiences of this witches lack of support with the current situation. On reading the referral I felt victimised. I felt targeted. I felt blamed. I found fault in her statements. Inaccuracies in her reports. Flaws in her wording. I took offence. I felt wounded. One line kept repeating over and over in my head. I handed the paperwork to daddybear and be scanned it and handed it back stating that although it was shit..it didn’t say that I was to blame nor did it say I’d done anything wrong. These were my own insecurities. These are the negative self talk haunting even the sunniest of days. But in that moment I could see that I had a choice. I could choose to let her opinions and inaccurate assumptions consume me or I could repeat my self prescribed mantra of positive self talk : 

“I am a good mum” 

“I am doing my best”

“Other people are entitled to their opinions; it doesn’t make them true”

“It is none of my business what other people think of me”

“I free myself from negativity”

“I choose to remain in control”

Negativity is consuming and rarely productive. It serves little purpose. It drags you deeper into it’s pit and relishes in our submittance. It watches us crack and surrender and will never offer a helping hand out of that pit. However, if we turn the tables and treat negativity differently it becomes weaker. Allowing yourself to recognise the feelings you experience. Name them. Explore them. What does it feel like, how has that affected your body and your thoughts and your behaviours? Now comes the part so often we forget to do… ACCEPT IT. You do not have to undo it, fight it or allow it to grow – just let it be. It’s ok to acknowledge that in a given moment you feel negative but it’s here in this moment you have the power. Here you can make a conscious choice to recognise it, experience it and ACCEPT IT, this is the liberating stage. It’s empowering you. Create a bank of positive self talk that you can turn to when you accept that negativity is filtering in. Choose to take control back and repeat these messages to yourself and out loud to others if it helps.

I was sharing my story of this form that had angered me with a great friend who turned and said “how are you so calm? I’d want to stick a hammer through her head if that were me!” For a moment we laughed. I shared just how I had felt initially and that yep mummagrizzlybear had definitely experienced momentary devilish revengeful thoughts but how much better I felt for practising my mantras and refusing to allow the negativity to win. Interestingly I’ve noted that by sharing my story I encountered further negativity  (even from a meaning well friend)… watch out for that… it’s everywhere.

It is in the ACCEPTING that you will discover a freedom. A release. Some people practice mindfulness as a means of learning to live in the moment and let things go. I find that simply allowing ourselves to accept what is happening for us in that very moment is the way to look in and recognise our opportunity to get back in control. We can make healthier choices. We can choose to be happier and calmer. Negative emotions just eat us up and weaken our armour that we very much need to continue to ‘battle’ on for our children. Whoops.. . Look at the negative wording in there… ‘battle’ … I’ll rephrase that as I can choose to reframe things to ensure negativity is not in the driving seat. We need to focus on positive self talk more often to enable us to continue to grow and be everything we are needed to be for our children.

Sulking. Emotionally wounded all before 9am. 

Mummabear is wounded. Hurt by words. Scarred by her failings and torturing herself with what she assumes other families do on Sunday mornings

Sunday’s generally comprise of Rugby matches in the ungodliest of weather conditions, ironing piles and Roast dinner (the saving grace). Sounds fairly standard I suppose? Except thrown into our normal Sunday routine is what I can only honestly describe as mummabears sulk. It’s not that I don’t like Sundays or rugby viewing in the cold for that matter but something about Sunday seems to mark the ‘you are failing as a parent’ card.

Today it was a pda breakfast protest. But it could have been anything. Sleep deprivation catches up on me…mostly by Sunday so I’m low on tolerance and patience and in mummabears true style I’m also newly determined (as we are embarking on a new week) that ‘ From now on’ we shall not be dictated to by PDA nor shall I allow children (PDAer or biggerbruv) to speak to me disrespectfilly. No ‘good’ parent would right? But of course I’ve decided not just this. I’ve created a mummabear monster who is expectant of not just well mannered children but also for those children to miraculously have morphed over night and comprehend the ‘new rules’ despite having had a late night.

Here comes the first blow. Baby bears wake up foul when short on sleep just like mummabear. Daddybear opts for “I’m not getting involved” attitude sensing mummabears is on a mission and all to knowingly ready for eruptions. 

On first glance mummabear appeared to have things nailed. Delivered clean rugby kits to babybears and giving clear firm instructions (carefully worded for pda’er to avoid instant meltdown) and cleverly informing them that breakfast was not up for debate or negotiation other than they could pick ‘small/medium or large’ bowl of cereal. Normally here would be where I’d insert ‘mega meltdown’ but even pda’er despite initial refusals requested a large bowl of chocolate crisp (not healthy but also not me being demanded of bacon and eggs). We’d agreed a choice of lunches to look forward to after rugby. All seemed well. That’s where I come undone. I allowed myself just briefly to feel ‘smug’, to feel I’d achieved my goal all without the help of daddybear and more importantly without losing my cool. Bonus.

NOT! Bliss is interrupted by Bigger bruv requiring some attention for some cream to be applied to a sore. A sore that I hold accountable for the resulting pda’er meltdown. “Urgh you’re disgusting I can’t eat now” (that’s the mild censored version of what came out of 7 yr old’s mouth) along with lobbing the ‘large’ bowl of cereal and verbally lashing out with unnecessary insults towards Bigger bruv and mummabear. Mummabear at this point is emotionally broken. It can happen that quick. To be so gutted that it’s pre 9am and it’s already cocked up is so overwhelming for sleep deprived mummabear that it’s a red flag to a bull. Children were not supposed to be rude and disrespectful today. Today was going to be different. Crap. I’m failing. Mummabear launches into response without clear planning or breathing (to allow necessary oxygen to reach the part of the brain that acts rationally!) And so we are in battle mode. A quick ‘consequential reminder’ is ineffective with PDA and knowing the strength and stubbornness of littlestbruv, mummabear opts for physically removing him from the room, partly to save Bigger bruv from the onslaught and mostly to get some desired effect (they had a movie on in this room so removing him removed that privledge) but now he’s proper furious and the abuse is hurled full throttle.

Mummabear regains mild control (of herself and the situation) by bringing in the newly purchased tool of a lovely brightly coloured sand timer (I’ve purchased 3 of varying times and I’ve quickly discovered that this means I can assess how much time I need to feel calm again and so use that colour accordingly) and instruct that he was to sit ‘there’ and think about the way he had reacted and spoken to me. He of course threatened to smash the timer but relented when threatened with the longer time frame of the blue timer I had not selected on this occasion!

During the timer break mummabear sips coffee and delivers daddybear his, whilst uttering mildly mad-woman comments like “I’m not putting up with this any longer” and “I will not give in” only to be greeted by the back of daddybear who is probably pretty pissed off to have been woken with this kind of shit again. We go to bed to this kind of shit too so we are all a touch bored of the same shit different day motto. But not today. Today was supposed to be different.

In the moments that follow the timer finishing mummabear receives a half arsed attempt at restarting the battle from pda’er before getting a disgruntled ‘sorry’ accompanied with the disclosure that there was no way i was going to get him to eat anything now. Oh well. I’m certain he’s had a few mouthfulls pre meltdown so that will have to do. Bigger bruv then brings out his big guns opting to also speak to mummabear like the proverbial piece of poo which brings about more stern words and ‘consequences’ because today is different remember. Daddybear chooses to join me on the frontline and reinforces some of my more rational utterings and before we all know it we are somehow all dressed and in the car on the way to rugby. 

Pda’er is showing minimal sign of remorse although he’s complied and is in the back seat as requested so that’s good enough for me. Bigger bruv is conscious of mummabears resting bitch face (see previous blog) and intermittently offers sorry’s and random conversations to try and break the mood in the car. Mummabear and daddybear barely communicate aside from pleasantries because the discussion mummabear wants to have is not for baby bears ears.

Mummabear is wounded. Hurt by words. Scarred by her failings and torturing herself with what she assumes other families do on Sunday mornings.

Although completely pointless  (other than allowing time for writing this blog) mummabear sits in the car sulking instead of joining her boys pitch-side.oh crap. There’s something else to feel shit about. And so with one long sigh topped with a deep breath and a search for a snippet of blue sky mummabear pulls herself together and pursues the supportive mother role in the cold. (Not without grabbing a coffee first… and definitely definitely not relenting on the today will be different motto) 

☆3 positives☆

1) the day is still young and despite a rough start I can choose to write a better middle and ending-  think I’ll go zumba tonight

2) I’m booking some flights later for a much needed short ‘adult only’ break 

3) last night (the late to bed night) we survived (unscathed) a friends party where pda’er would usually have numerous meltdowns

Sporting my best ‘resting bitch face’ we plod on…

My face makes him ask ‘mummy are you cross?’

Monday Monday… the house falls silent. I should be on my way to work but I’m basking in the ‘still’ in the calm and mellowing my own racing heart. I can feel my pout and furrowed brows etched on my face and I’m trying to relax. My resting bitch face appears all too often. Some people naturally look chipper when nothing else consumes them; not I! I have a face that says I’m mad even when i’m not. When sat in thought or idle  boredom my face tells others to not cross me. It’s not intentional. 

Mummagrizzly bear has the face that makes Bigger bruv ask ‘mummy are you sad’ or ‘why are you cross’… littlest bruv doesn’t detect this so well and of course probably assumes that any of the kick offs so far this morning could account for the bitch-face-look I pull off so well these days. I wonder if I wore it pre-diagnosis? Sure, things have been far harder in recent months but did my face ever resemble anything other than a knackered pissed off crazy lady? Possibly not since Littlest bruv was about 6 weeks old! Tough from the start he was. Now aged 7 and causing mayhem despite us reaching that pinicle moment of diagnosis in early January; as a family we are probably in more a state now than we’d ever been without a diagnosis.

Bigger bruv was grateful to get out the door early. A recent tactic employed by mummagrizzly bear in an attempt to save him from witnessing the battles we go through to get littlest bruv safely off to school in his taxi. So dutifully I text to arrange for Bigger bruv to call in on a mates on the way to school and therefore pack him off ahead of the storms. He’s already endured the breakfast battle and the teeth brushing battle and the ‘surrender your weapons’ battle (no I’m not letting littlest bruv go to school armed with daggers and swords no matter how ‘toy’ like they are!) So I’m pleased he’s out the way and sent off for his learning day relatively unscathed. I’m hoping now that I mustered a smile to crack the bitch face look as I waved him goodbye. 

Littlest bruv is actually calmer with my undivided attention too and on this occasion gave in to a brief cuddle and a game of catch (ultimate distraction) as we awaited his taxi. Compliantly and calmly he’s set off today. I’ve learnt that  this will have no significant bearing on how successful his day will turn out and think that’s why I find myself Sat wearing the resting bitch face contemplating my day. Mummagrizzlybear has lost her spark for her job since being off for over a month with Littlest bruv out of education. I’m back at work but either only in mind or body, never both together. I feel detached. Incomplete. Distracted by home and yet grateful to be momentarily distracted by work. Over thinking and yet not focussing at all. Feeling behind in all areas of my life. Suddenly the resting bitch face let’s out  a therapeutic sigh and I’m reminded to find my 3 positives before I plod on with Mondays duties.

☆3 positives☆

1) We’ve shared lovely parts of our weekend watching rugby with family with minimal meltdowns

2) Littlest bruv managed a whole day being cared for by my cousin meaning that there are opportunities to ask for help that work

3) Biggest bruv is newly motivated in a maths challenge at school and mummagrizzlybear loves an opportunity to play maths teacher

…Can I get away with another work from home?! Just read a quick blog that sums up why I feel so tired before my work day starts…