You ARE more powerful than you give yourself credit for

I promised to write about our successful ‘recipe’ that has helped the mummagrizzlybear household to achieve great things. I wrote previously about how change IS possible.

Yesterday Babybear and I visited some staff at one of the temporary schools that he attended during a phase of his life that was incredibly unsettling. Those staff haven’t seen him for nearly two years. One teacher (his favourite – and someone who certainly made a difference when he needed it most) recalled his first day when Daddybear and I dropped him to their school. He’d been out of education for about 4 months at this stage. He was not diagnosed with Autism and although we strongly suspected PDA we had at that point encountered very few educational professionals who understood our perspective. He was petrified and he demonstrated this, back then, by using the cave-man fight or flight responses regularly. On that day he attempted to abscond many times; he cursed and hit out when he was approached and like a wild animal was eventually contained against his will. I left him there. And man did I sob. I begged of the teacher “tell me how are you going to keep him safe?” You see, my only job had become ensuring just that. His safety. I’d stopped being able to be concerned about his learning or his enjoyment or mine or Daddybears’ real-life jobs. Bigger bruv had been shoved to one side; or more often than not, shut safely behind a closed door as this was the easiest way for me to know he wouldn’t be harmed. Life had stopped being about living.

So, to be able to happily greet that teacher, having left work and collected babybear from another positive full day at a school he loves, was nothing short of a miracle. Today’s visit was about marking a point in our journey where we can celebrate. We were able to reflect and share our ‘good news’ story with some of the team who had really only encountered our family at our most desperate. So you see, change really IS possible if you are open to trying out our recipe.

Each ingredient can be added in any quantity. The more you add of each ingredient the better the taste. But ultimately a dose of each ingredient is key to success.

Each ‘ingredient’ in our recipe has many ways it can be interpreted.

• A new way of thinking (because nothing changes until you change the way you think)
• Education (because knowledge is power)
• Self- care (because overcoming difficulty is draining)
• Collaboration (because going it alone is fruitless)

A NEW WAY OF THINKING is where we begin to make adjustments; it is by addressing our thinking that we discover how powerful we are. We discover just how much we have control over.

All of our THINKING influences how we FEEL and this in turn affects the way we BEHAVE. The power is therefore in what we think.

Too often we look at the signs and symptoms of any given ‘problem’ and then we fruitlessly attempt to change those byproducts….but this is what they are…the byproducts of something much bigger. We must go back a stage and first look at what it is that we ‘think’ about the ‘problem’. Begin right there. Does it HAVE to be referred to as a ‘problem’ at all?

I supported someone today who told me they were really worried about this coming weekend as “that’s when it’s going to get tough”. Holding up a mirror for them I gently exposed them to their own way of thinking and helped them to see how this linked to how they feel about the weekend and will undoubtedly impact also on the way they’ll experience it. The self-fulfilling prophecy innate in all of us pretty much guarantees that this family are about to have an awful weekend. When talking with them, it was clear that having their way of thinking challenged was going to be a new and quite uncomfortable experience for them. It is for most of us. A lot of us have spent a very long time practicing the unhelpful art of negative thinking. We’re good at it. So it really doesn’t matter what was going to occur for this family this coming weekend. Because of their way of thinking it was obviously going to be ‘tough’. You cannot turn a pessimist into an optimist overnight and to attempt to do so would be both daft and dangerous. The aim should always be to help make a shift towards ‘more realistic’ and to help shine a light on the balance between the possibility of doom and gloom against the likeliness of positive outcomes.

MAKING CORRECTIONS

Like taking an eraser and rubbing out some spelling mistakes, we can also rub out our unhelpful negative thoughts. Just like handwriting practice we can also test out an alternative ‘thought’ once we have rubbed away the error. Sometimes the error can still be seen; it might faintly linger, but we CAN write over that mistake with a new more helpful realistic thought. And the harder we push with that pencil the more engrained the more helpful way of thinking will become. Here lies the POWER. That power lies within YOU. You do have a CHOICE about the thoughts you allow yourself to have. You can CORRECT any unhelpful ones with something more realistic and constructive.

If you are struggling to come up with a way you can challenge an unhelpful way of your own thinking try presenting as though a good friend was telling you the thought. We are all so much better at helping others before ourselves. What advice would you give a loved one if they thought the way you do?

Some examples of common unhelpful thinking and some more realistic thoughts that might help you include:

A DOSE OF POSITIVITY

Some optimism is useful, but this can be added into your day even when negative thinking isn’t necessarily controlling your experience in an unhelpful way. Take a simple everyday task like brushing your teeth or driving to work. Imagine including in this every day task an internal mantra that helped you on the way to ‘feeling’ just a little more positive. At any point in your day you can add in a ‘helpful positive thought’. It can be whatever you’d like it to be. What ‘gift’ would you give to a loved one? A compliment? Some thanks? Recognition? Gift those very things to yourself by adding into your mundane routine a little spark of positivity. Think to yourself “I am strong, I am capable” or “today is going to be beautiful” and just see how that influences how you feel and what you experience. Use this tactic to also help you in moments of strife. Running late? Try, “I am calm even though my attention was needed elsewhere this morning” or “I am only human and my boss will understand”. Be kind to yourself.

These tactics all influenced the mummagrizzlybear households shift from a place of ‘struggle’ and ‘despair’ as we fought for babybear’s PDA to be understood and his needs appropriately met, to the home where we now thrive and not just survive. Our language has altered and I am eternally grateful to the many brave people who gently held up the mirror for me, so that I could gradually learn the ‘unhelpful’ errors that we needed to erase. We had experienced so much negativity, from seeing our child suffer to not having sufficient support that our whole world had become consumed by unhelpful language. I spoke daily of a ‘battle’ and thought endlessly about the things that had gone wrong. Our daily script was plagued by negativity until we were helped to practice noticing the ‘good’.

We are so much happier for it. It was NOT easy to come to terms with some of the things that I was inadvertently giving power to. The one that still hurts to this day was that through my thinking errors, I was allowing babybear to physically hurt me. I take ownership now for the fact that I had unhelpfully believed that as part of his condition he was unable to control his emotions and therefore lashing out was part and parcel of life with PDA. I was thankfully challenged on this and over time I was helped to believe something new. I was helped to THINK a more helpful, realistic thought. I was reminded that ‘everybody is responsible for their actions’ even when we are angry, scared, overwhelmed or unable to express ourselves, we ALL remain accountable for our actions…but first we need someone who holds us to account. I had inadvertently stopped holding babybear to account because I wrongly believed that due to Autism/PDA he was somehow exempt from being responsible for his actions. The very day I sat and cried and asked myself what I would tell a client who had been attacked, I realised that I needed to change the way I thought if there were to be any hope of babybear one day reaching the real world where he’d be arrested if he acted out the way he had become accustomed to treating me. That day was the day I decided to believe that it was ‘not ok for anybody to be hurt’ (even when babybear was distressed). This change in thinking changed our world. We built on this. We added, in small doses, optimism over time and we began to allow ourselves glimmers of hope. These led to us thinking more about ‘what could be good’, ‘what could go well’ and we focussed more closely on the positives we could pull from every experience. Even when we had ‘blips’ we learnt to challenge ourselves to gain some new insights from it so that even negatives could be turned into positives. I can hand on heart share that mummagrizzlybear has not been subjected to any physical outburst or injury at the hands of a distressed babybear for years. Now aged 10 our little PDA’er has been helped to understand what is and what is not ok when we are experiencing anger and frustration. He, like we all do, still feels these powerful overwhelming emotions from time to time, but he has developed safe and sensible ways of responding to them… And his self-esteem has improved as a direct result.

PRACTICE PRACTICE PRACTICE

Occasionally a POWERFUL negative thought will take hold. More often than not for myself this will occur at the wrong time of the month or when I’m run down through tiredness or feeling poorly. At these moments, resilience, self-care and patient rehearsal of practicing the more realistic helpful thinking is required. Nobody gets this right all of the time. The weapon in your armour is being able to notice the negative thought. They are automatic. Spotting it early gives you more chance of zapping its power. Noticing, for example, your head running you down with a “you’re so useless” message, gives room for you to respond internally with the correction (the more helpful rational thought). “Actually, I’m human, not superwoman and everyone has off days!”

This ‘ingredient’ from our recipe is about altering the way we think. Nothing changes constructively if we are in a ‘stuck place’ with unhelpful negative thoughts. If you are facing a challenge, believing that it will never get better or that it’s impossible for things to be different, you are allowing those powerful thoughts to dictate the experience you are living. For change to become possible, we have to believe that it IS possible first. We each have the power and this is step one.

Stay tuned to share in steps two, three and four.

• Education (because knowledge is power)
• Self- care (because overcoming difficulty is draining)
• Collaboration (because going it alone is fruitless)

Change IS possible

Many of you will know that my absence in my #virtualvillage has been for good reason. After many years of bumpy twists and turns the Grizzlybear family found themselves on the homeward straight. I’ve written previously about how the lack of drama lead to a lesser motivation for creativity; I just didn’t need to write for therapeutic release in the same way I had when we were going through the mill. I’ve also shared before that I had encountered a strange feeling of somehow not quite ‘belonging’ in the circles I had forged as part of my support network if we were no longer ‘struggling’ the way we had before.

Mummagrizzlybear is my online name I choose to go by as it preserves my children’s anonymity. Mummagrizzlybear parents one neurotypical nearly-teen and one rapidly growing babybear who at aged 7 (oddly, three years ago on this very day) was diagnosed with ASD and a rare subtype of the autism spectrum, known as PDA.

In the past years we’ve navigated our way through some fairly significant hiccups as a family and much of mummagrizzlybear’s writing has previously focussed in on the ‘challenges’ PDA has presented. It’s very hard to condense the past two years into a blog post but for those that had followed our journey up until that point, I feel I owe you an update!

In summary, babybear was seen by CAMHS very promptly after his diagnosis from the ASD team and with a very supportive consultant psychiatrist and medication, he has become much more able to manage some of the challenging presentations of PDA. Babybear gained a place at a very special school, we successfully moved house and now live in quite a remote, rather unusual location, our adult relationship took a battering after some big upheavals, biggerbruv started secondary school and despite bitter feelings about a new location, has thankfully survived the transition, even if the first year was his time to rock the boat! A few months after this, I took on some new training to add some strings to my bow and to rebuild my confidence. I’m now able to deliver a well being programme currently being trialled and likely to eventually be rolled out across the NHS. Daddybear and I are proud to say with some very aptly timed counseling offered to us by CAMHS we have worked through years worth of trauma and are now no longer existing or surviving but instead living and thriving; still together, writing a new book, not just a new chapter. Instead of returning to the world of work in domestic abuse I sought out a new career challenge that could encompass my experience in the helping professions, counseling background and my newly acquired parental experience of navigating the world of special educational needs. By nature I am passionate about mental health and now have some skills and experience about how to advocate for improved well being too. Ultimately I really hoped to use these skills part time and term time if possible as I’d also gotten quite accustomed to having a good amount of ‘me’ time balanced with plenty of time for the family. A year ago, I took on a role within a mainstream primary school as a Parent support advisor. It’s tremendously rewarding, despite the pay and personally testing when I meet precious families who are currently going through struggles not dissimilar to those we struggled through with babybear.

Today we are ALL stronger than ever and in a good place.

I realise now that there were so many factors that contributed to us arriving at this place. I’ve also recognised that there’s a bit of a formula that can work for any kind of challenge encountered. I’ve put it to the test personally but also use it repeatedly with families that I now support at work, SEN families or not. It’s not rocket science and on the surface seems too simple to be effective. Brainstorming my ideas on how to bring this to a wider audience I managed to narrow it down to 4 little headings. Now please bare in mind that for us, these 4 little ‘steps’ took place over a number of years. When I was just at the brink of getting my ideas on to a page, ready to share, I panicked. What if I’m wrong? What if someone else disagrees? To reassure myself just a little I gently asked Daddybear the tough question that had been buzzing around my head for weeks. “If you could write a recipe to explain how we got from back there (horrid place) to here today (a pleasant place)… What would you say were essential ingredients?” To say I was blown away with his response is an understatement. He may have found alternative words but our thoughts were identical. I then showed him my brainstorm and we delighted in a moment of smugness and relished in how far we’d come!

We believe that this recipe can help to remedy any challenge.

Each ‘ingredient’ in our recipe has many ways it can be interpreted.

Each ingredient can be added in any quantity. The more you add of each ingredient the better the taste. But ultimately a dose of each ingredient is key to success.

• A new way of thinking (because nothing changes until you change the way you think)
• Education (because knowledge is power)
• Self- care (because overcoming difficulty is draining)
• Collaboration (because going it alone is fruitless)

Too simple?

For those of you sat there thinking “that’s not going to work for us” I urge you to challenge that thought as your first step! For those of you who think ‘education’ means going back to school, I promise you that empowering yourself with knowledge starts closer to home. For those fretting they don’t have time for self-care I absolutely assure you it’s essential and possible no matter what your circumstances. And lastly those of you who fear the idea of collaboration because you feel very much alone or fighting against others that don’t understand, I want to reassure you that you can begin by simply ‘collaborating with the issue itself – by recognising it and reaching acceptance with it’.

Each ingredient really does need a whole week or more for me to expand on it and to enlighten you on how these have influenced our journey. Luckily, I feel excited and able to do this. Stay tuned 😘

PDA and ‘Sleep boxes’

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

My doubts included the fact that, 

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

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

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

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

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

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

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

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

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

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

Into his box went the following:

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

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

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

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

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

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

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

PDA Sibling resentment

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

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

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

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

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

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

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

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

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

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

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

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

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

A brief insight into our PDAday. Exclusions and accomplishments.

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!

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

…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.

PDA, presents and surprises!

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

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

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

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

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

Tactics tried and tested for successful gifting include :

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

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

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

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

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

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

Mumma do the hump

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=true ) of your support network…talk about it…ask for help.

Grieving and functioning … post diagnosis

Mummagrizzlybear has been exhausted for too long,  a good night’s sleep does not relieve it and the opportunity for a ‘break’ doesn’t cut it either. Almost 6 months ago the chaos began and we can probably count on our fingers the ‘normal’ days since then. The irony of the word normal makes me chuckle sarcastically inside (mustering the strength to actually laugh is just asking too much); what I now refer to as normal, I’m certain, is anything but normal to Joe blogs. Is it the lack of normal that wears me out so? Would a week of normal restore me? 

There have been waves of emotions since receiving babybears official diagnosis back in January this year. We’ve probably dipped a toe into most of the stages of grief along the way and I felt I’d allowed myself the kindness to explore what I feel we have lost as well as fully recognising and appreciating the condition and its impact on my baby bear, so how can it still hurt and shock me when I’m triggered into noticing grief once more?

This week, year 3s in our area have been packed off on their first camp away with school. Baby bear had his name down to go prior to his exclusion. He’d however been excluded from this camp far before his official exclusion from school. School had not cashed my cheque for the deposit as they did with other mums. They instead brought me to a meeting where they described what they ‘might be able to do if his behaviour improved’ and rejected my offers to provide a carer to attend along side him so that he may be able to experience the camp along with his peers. I accepted that he’d need more support than others, but was adamant that he shouldn’t be excluded due to the nature of his disability – surely that would be discrimination?  However, school were not in the least bit interested in my suggestions and as it turned out, they made pretty sure he could not attend anyway. It’s been this camp that has alerted me to another facet of our not-normal life. It has resurfaced the grief. I’ve been exploring uncertainties like “would he have coped if he had been given the chance to go?” Right at this moment any change to routine causes massive disruption to his well-being, any moments mummagrizzlybear attempts to steal to herself are greeted with a needy Baby bear impressing demands for support in one shape or another, so could he have gone away for 3 days? Will he ever?

Feeling sad about losing something you never truly had seems quite a mixed up concept. But that’s where I’m at. I’m sad that he’s not neurotypically being packed off to camp on his first adventure away from home. I’m sad that he’s not in the slightest bit bothered that his peers get to do this. I’m sad that my aspirations about his future have diminished into a series of uncertainties. I’m sad that ‘new things’ require such a careful tact, I’m sad that other people can make ordinary requests of their child and not be met by anger. And I’m selfishly sad that I’ve reduced my working hours (to provide more caring hours and find a better balance between work and home) and feel zilch benefit so far from having done so (in fact the only things I’ve clocked is the half size pay packet and lowered moral).

I’m not so lost in this grief that I am unable to notice the ‘good bits’. I can name them. These past few weeks there have been a few worth mentioning. We’re embarking on night number 7 without a night-waking (strange correlation to having attended a sleep workshop last week!) We’re receiving support from professionals and there seems to be light ahead of next week’s TAC, baby bear has taken to holding my hand (on more than one occassion) in an affectionate nice way whilst we walk the dogs and we’ve shared some nice family time out together. Like I say. I can name them. Even crack a smile when thinking about them but it’s somehow not masking the sad bits.

A friend a week or so ago commented that I’d been absent but she wasn’t going to push me, she’d just figured that we were doing what we needed to right now. Another friend mentioned only today that we’d not seen each other in yonks. I’ve unanswered messages sitting in my inbox as well as incomplete work tasks that I’m routinely ignoring. I’ve not been for a run for ages and make-up seems an unneccesary chore. Professionals pass me tissues and ask questions about whether I have a supportive GP? I’m going through the motions of making sure I get ‘me-time’ or planning things to look forward to (a hen do, a holiday, a concert) but all with little positive effect and this is so unlike me. I’m irritable but functioning. Constantly tired but functioning. Emotional but functioning. Cutting myself off but functioning.  Seeing it here in writing is scary. My wellbeing is slipping and I’m in the driver’s seat choosing this path. How can this be? I know depression to be a stage of grief but it’s a place I do not want to visit. No matter how fleetingly. 

I know kubler-ross describes the five stages of grief to be Denial, anger, bargaining, depression and acceptance. They do not have a time frame for each phase to pass nor an A to B strict pattern to follow. There’s every likelihood that I’m simply re-visiting a stage that I’m less than comfortable with. And that’s ok. It has to be. Self-kindness has to be far more beneficial than beating myself with the metaphorical stick for feeling low. 

So for me I’ve given myself a bench mark for what will not be ok. Just as an extra self-care checker should I become scared again that this depression might not pass. If I can answer ‘yes’ to these, then I think i’m ok. If it starts to be ‘no’ then I’ll speak to a doctor.

1) am I able to enjoy myself in the company of others?

2) do I notice the sun or the blue sky?

3) is there other evidence or explanations for why I may be feeling low?

4) do I still consider myself to be functioning?

The diagnosis will not disappear. Life will continue to deliver little reminders of what ‘might have been’. There’s little point fighting it or playing the ostrich. Embracing it will be key but gently and only when I’m ready. 

Jekyll and Hyde life

When you find yourself googling ‘how to relieve pain after strangulation’, I guess you could say things got pretty bad last week.

Ironically I’d just had a visit from the SCIP worker and uttered the fateful words ‘touch wood but things have improved’. Our meeting was useful and we discussed plans going forward and ideas about how to address the newest hurdles. Today’s topic was mostly about strategies to deal with our Pda’er and his ‘need’ to control me. The upshot being that it was about weaning him off me. Gradually showing him that he can spend short periods of time independent of mummagrizzlybear. 

PDA, as we know, creates severe anxiety where our son is driven to control pretty much everything and everyone as one of his coping mechanisms. Due to the past few months of stress, our son regressed, massively, and has been limpet-like ever since. It’s not comfortable for him or for me. In a strive to continue moving forwards I was hoping we’d develop strategies to help him see that he can ‘be’ without me, much like he used to be. He used to play independently and be comfortable with ‘free-time’, so I’m hopeful we can return to this instead of remaining in the state of needing 100% 1 to 1 attention 24/7! It needed to be baby steps and I’d take just 1 step at a time.

Step 1: set up activity to do alongside me

I’d agreed with babybear before he left for school that on his return, I’d have the playdoh out. I helped him find the toys he likes to play with and set myself up a task to do alongside him at the table. He asked me as he does a lot at the moment, to ‘play with him’, which loosely translates as sit here and do the things I tell you to. So I say, ‘mummy is going to do this paperwork here for 10 mins and then I’ll join you’. I keep to my word and join him, stating that I’ll build 5 of the cars he’s demanding I create, after which I’ll hang my washing up. At this point, he appeared to be managing and carried on playing independently. 

It was then that I heard the shriek. An out of control I’m losing my shit, screech, yelling about when would his brother be home because he’s bored and school should never have changed the times because now he has longer on his own etc etc. Queue the irrational Jekyll and Hyde type shift from calm to outraged. Seemingly unprovoked but evidently reflecting over the ‘changes’ he is unhappy with the monster errupted.

Mummagrizzlybear remained calm and feeling a sense of strength from the empowering hour or so with the scip worker, I refused to get sucked in and over react. Any mess can be cleaned up right? The playdoh was launched in great globs across the room and horrific screams erupted from him as he unravelled. Getting minimal response ( assuming this was for my benefit) he launched in to the expletives and more obvious destruction right under my nose. Without wishing to goad him I calmly reminded him that he’d be responsible for the clear up and suggested he head for his room where his sensory relief gadgets and gizmos might help. He was past being compliant or accepting my ideas and so the destruction continued. Refusing to engage in this (and ultimately feed his desire to have my undivided attention) I turned away and at that moment he saw red, running and placing both his hands around my throat from behind me and using real controlled force to squeeze my airway. I’m not sure why I didn’t struggle, possibly in fear that he’d accidentally go too far if I put up a fight? I don’t know? I’ve never been strangled before but somehow I stayed calm in an attempt to call his bluff I guess. Luckily it worked. He moved on to more destruction and I removed myself to safety, communicating to him that I was not prepared to be with him whilst he was out of control and reminding him to use his room as his safe space.
In a breakthrough moment he retreated to his room, I summoned strength to offer him reassurance and ensure he had the sensory resources he might need to calm. In time with lots of cursing (from him) and one attempt to flee the house, his tact changed to blame. “It’s all your fault” he was yelling, “you should have given me my medicine” and “you should have helped me”.  I realise in that moment that we forgot to give him his meds last night, could it seriously be connected? Wanting to restore a sense of calm control I offer him some medicine now and take the opportunity to ask him what it is that I could have done to have helped? He was refusing meds and claiming that he wished to stay ‘angry’ . This provoked a reaction from me. How could anyone want to behave like this? I remind him that he could have really hurt me. He cries out in a distressed way that it wasn’t him who did this. He was devastated to reflect over this and he began to talk of the things he’d broken too. Eventually, he takes some meds, spends 10 mins on his bean bag with a timer as a ‘time-out’ for the destructive and rude behaviour and then moves on to an apology. He was also directed back to all of the things he’d thrown or wrecked and ‘supported’ to put things right again. 

He was exhausted. Mummagrizzlybear was sore but in one piece. Bigger bruv had returned amidst the commotion too and was safe. A level of calm had returned. The baby step had been taken and the seed planted. He went on to manage a short period of time alone. 

Mummagrizzlybear wishes that it hadn’t of got so out of hand but feels that some gains have been made despite enduring brief strangulation! Calm parenting helps. Remembering not to get sucked in helps. Demonstrating self respect and maintaining boundaries helps. We achieved short moments of breaking away from the constant 1 to 1 he demands. We even shared a moment of true care and consideration whilst he was remorseful. Later that day we shared tenderness. Recognising what helps and what victories are made helps us all survive Jekyll and Hyde life. 

Today’s shift of mood, much like most others was seemingly unprovoked or at least unwarranted. The shift to irrational, volatile behaviour can be instantaneous and this sums up why he is currently not in mainstream nor managing the usual peer relationships one would expect of a child his age. Today’s physical outburst followed cuddles and kisses and a happy, calm homecoming from school. It’s this that tends to catch me off guard; all Mummygrizzlybear had suggested was that we would walk the dog. Although my first warning comes from him in the  shape of his growls and objections, when I continue to stand strong and not allow his threats of ill behaviour to manipulate the situation, he becomes quickly out of control and bubbles over into irate. In this state, he unleashes the verbal abuse, screeches and violence and when I retreat he’ll break or destroy things. 

Over years of learning, we’ve reached a point where eventually he can be guided to a safe space to calm and today, much like any other, in time he calmed and afforded me the apology and his explanation for his frustration. There lies the victory. In time we were out on a short walk with the dog. Where safe to, I believe in always seeing through the original plan, no matter how subtly, as it can reinforce the message that the outburst was ineffective and provides an opportunity for us to reflect on how ‘well’ the task had actually gone. Today the walk was short. Today I recognised that if I pushed for more we would not have had this outcome. 

I’m not certain which character I tucked into bed nor which character might wake through the night or greet us early tomorrow morning. But I do know that both characters are my son. My babybear. And whether calm or irate I love him. I’ve grown to know both Jekyll and Hyde and accept that little helps us predict which version we will encounter from one minute to the next. It’s dawned on me that not many other environments accept any person to be more than one personality. For most it’s too much uncertainty to handle. If you analyse the people with whom babybear appears to feel safe and content, I’d say that these people have all developed the skill to show him that it is ok for him to be whomever he is in that moment. I’m thankful that I can support others to appreciate that it is PDA that creates this and not wilful naughtiness. Punishment and rejection are damaging but onsequences and right from wrong can still be taught. Calm parenting helps. It’s not easy and certainly not always remembered but I’m human and to learn, I’ve had to get it wrong along the way. Luckily for me (I jest) PDA ensures that life remains unpredictable and the rules are constantly changing so I have ample learning opportunities!