The power of ‘deep breaths’

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What have we learnt in a year? Our PDA story

I now recognise that ‘everything can change if you first choose to’. In our world, a year really has changed everything.

This post comes to you as a contribution to ‘Steph’s two girls’ series on her blog ‘This is our PDA story’. The PDA society are once again backing her plight to further raise awareness of Pathological Demand Avoidance by encouraging families to share their stories via her blog series, you can find out more here

Steph’s blog has been one of a small selection of fellow parent-carer warriors I have connected with and been positively influenced by since I have started blogging.

I’m going to start this blog painting you a picture. Its a dark, cold January night and a friend suggests we take the kids and dogs on an evening stroll around the village (part of our ‘we’re gonna be fit for the summer regime’). This is not part of any normal routine for my children, who are quite used to ‘gaming’, watching TV and reading before bed most nights. One is now 10 (known here as Biggerbruv) and an xbox addict, he is in year 6 and couldn’t think of much that would be ‘uncooler’ than being seen out with his mum. The other is now 8 (Our ‘babybear’ also referred to as my PDA’er). He likes his evenings to go ‘just-so’. He has PDA (Pathological Demand Avoidance) alongside some exciting ‘keep mum on her toes’  personality characteristics! Mum, being boss, can make decisions about what the family are going to be doing tonight, so with minimal coaxing and planning, everybody is wrapped up warm and the dogs are on the leads. There were minor objections from the PDA’er but humour and distractions helped. On arriving back, those cherubs who often bicker and fight sat together to read to each other on the sofa before snuggling in for some TV and then briskly heading off to do their teeth and jumping into bed. They slept through and in the morning got themselves dressed and organised before departing for school all without one single fall-out or ill word. This my friends is what we call a one-off and not a typical picture of  a night in the life with PDA. But a pleasant one none the less!

12 months ago, we received a formal diagnosis for our son from the Local Authority Autism Spectrum Disorder Team. We’d known about PDA for approximately 4 years prior to this so although the diagnosis was more confirmation than a shock, it still hit us like a bus. I attribute some of the ‘grief’ I experienced to the traumatic previous 4 years of encountering un-supportive and critical finger pointing professionals who wore down any essence of confidence or self-esteem that I had as a parent. To gain a little insight into our post diagnosis grief, read my earlier blog on this here…Grieving and functioning … post diagnosis 

PDA to our household a year ago looked nothing like the picture above and i’ve just ‘avoided’ writing about this by distracting myself with facebook, because to be quite frank, this is painful to reflect upon. Last year, my 7 year old son was critically vulnerable. He’d been excluded from his mainstream school for ‘periods of prolonged challenging behaviour’  and had endured an awfully (mis)organised ‘managed move’ to an alternative smaller mainstream for a whole 3 hours before absconding and being returned by the police. He was scared, scared of everything and anything, anxious beyond description.  He did not have a healthy sleep pattern, he self harmed, he had obsessive and limiting food obsessions, he regularly lashed out, he was reclusive, he was destructive, he had frequent night terrors when he did sleep, he was defiant and avoidant by day and distressed by night and saddest of all he’d lost the light behind his eyes; that glimmer of ‘shiny sparkle’ I’d once known as a toddler, had gone. As parents we were at our wits end. We’d survived years of ‘challenging behaviour’ prior to this but we would have gone back to those days in a heart beat. At our worst (and probably my most painful memory) we were a desperate family quite literally clinging on to a little boys life as he attempted to throw himself out of an upstairs window and then when successfully rescued ran to the kitchen and pulled a knife on himself with tears streaming down his face telling me and his brother how he ‘just wanted to die’. I can’t recall the source of this meltdown. Back then I hadn’t really learnt to see past the challenging behaviours and this was a period of our lives that whizzed by in a blur and were tinged with heartache. It changed ALL of us. It quite nearly broke us in many ways.

I became Mummagrizzlybear. A parent-carer new to the world of parenting a child with a ‘label’. Prior to this I’d been the one labelled, from neurotic mother through to the anxious mother. The birth of mummagrizzlybear gave me a new platform to ensure I took care of myself and a way of documenting our journey. I found writing to be therapeutic and in many ways found myself able to intertwine my work head and reach out and help others along the way. I made a conscious decision to attempt to maintain my children’s privacy and dignity by keeping my blog anonymous. This has had some pitfuls in terms of being able to spread awareness and also in being able to connect with other families who may will prefer a ‘real’ face and name to interact with but on the most part I feel I have made the right choice for my family right now.

You can follow our world and #virtualvillage of a support network here on facebook or just keep an eye on my blog updates here on wordpress

The ‘usual’ types of everyday PDA challenges that you will read about on sites like the National Autism Society, here and they can be used as a helpful summary and go a long way to help families and some willing professionals to comprehend that the underlying root of all PDA behaviours is an anxiety-based need to be in control. What these sites and information guidelines do not explicitly get across is to the extent that this can play out and I also feel they too often miss the opportunity to explain the impact that the excessive anxiety can have on other things like self esteem, mental health and ability to interact with the world in general.

The tables started to turn in our household with 2 key events occurring virtually simultaneously. Firstly, Babybear post diagnosis was seen by CAMHs as a matter of urgency and the Psychiatrist prescribed medication to alleviate some of the symptoms. Secondly, we entered the world of ‘alternative’ education provisions. As parents we had to shift our ‘expectations’ and throw out the typical ‘rule book’ spouting out parenting strategies. We needed to prioritise ‘well being’, ‘happiness’ and ‘mental health’ for all of us in the grizzlybear household over and above the practical things like education, finances and employment. We learnt to measure ourselves differently and became more open to viewing the world through the eyes of our PDA’er. A successful positive day became a ‘calm’, low on demands kind of day. One where we could be tucked into bed unscathed at the end of it. One where nobody had been excluded during that day. One where no one had been injured or property destroyed. For many months our focus was completely on getting our babybear re-settled and in fairness this became a far easier task once we stopped trying to squeeze our square-shaped peg into the round holes of a mainstream education. The transformation from chaotic, misunderstood and destructive family life to a calmer, respectful and compassionate world was by no means overnight and had us riddled with guilt and heart ache as we felt we neglected Biggerbruv whilst tending to mountains of meetings and appointments all with the limelight on the youngest. You can read about my thoughts on Biggerbruv’s justified resentment here (although it’s just made me cry re-reading it!):  PDA Sibling resentment

During these months of adjustment, we like many parents in our boat attended courses on ASD and a particular favourite of mine a Sleep workshop bringing about one of the more significant changes in our house in helping Babybear to sleep alone, in his own bed, through the night! (When you get a chance check out my posts on the Sleep stand off or PDA and sleepboxes, if you too are a family having a night time sleep crisis). We also had many moments of feeling like we couldn’t go on or wanting to quite literally run away. It was not easy. Mummagrizzlybear read heaps. Anything that could offer glimmers of hope and ideas we had not yet exhausted. My favourites being ‘The Explosive Child’ by Dr Greene for introducing me to the idea of ‘lagging skills’ and ‘Can I tell you about pathological Demand Avoidance Syndrome?’ by Ruth Fidler which was a great book to share with my sons (as its written from the perspective of a child with PDA) so that they came to recognise that other people have PDA too. We also had varying professionals come in and out of our lives ranging from a Family worker, a Behaviour specialist, an Educational Psychologist, a Psychiatrist, a mental health worker, A SCIP worker (supporting families with complex disabilities), Disability team social worker, an Autism specialist and the alternative provisions’ SENCo and teachers to name but a few. On each new meeting we had to share our ‘story’ from the beginning with each new member of the team. Whilst the support was invaluable in many ways it was infuriating in others and we also faced soul destroying responses from those we assumed ‘would help’ but instead said things like, “You’ve done everything we’d suggest, there’s nothing more we can offer” or “I’m sorry but you do not meet the threshold for that support” etc. We’ve overcome obstacles and hurdles and we have fought for what we know is right for our PDA’er. We are so close to getting our son a place at our dream school for him. We are so so close. I can’t quite describe my excitement for him! We have defeated so many demons that we are a family embarking on new adventures in the months to follow, and a year ago we simply COULD NOT have done this and nobody could have convinced me otherwise.

Reflecting back over the things we have gained in a year has me feeling quite proud of our little grizzlybear family. Much of the things we have learnt have benefited both our PDA’er and his Biggerbruv (our virtually neurotypical pre-teen!) We have become calmer, less anxious parents who are more self assured and aware of our resilience. Mummagrizzlybear’s blog posts kind of archive our achievements really but here’s a little summary of our highlights:

  • Overall reduction of meltdowns both in terms of frequency and intensity. We have all developed a far better understanding of the triggers and the required coping strategies. Over time we have helped babybear to learn how to communicate better about how he is feeling and what he needs. This also progressed into him being able to reflect over incidents and help us to understand what might have helped or what we could all do differently next time. We have action plans for certain known triggers and make a huge use of humour. A bit of reverse psychology often helps but overall the key thing to reducing meltdowns has been about learning to modify the environment to reduce his anxiety and ultimately to minimise direct challenging demands and help him to feel more in control.
  • We conquered SLEEP! We all now sleep in our own beds once more. We recognised that  only we could change the unhealthy rituals and patterns babybear had become reliant on and we took control.
  • As a family we developed the united front and focussed our energy on feeling like a team. Our social circle became small but we became less frantic and more attentive to each other. I think we have moved into a phase of acceptance and we now embrace not being ‘ordinary’. We no longer make apologies for the quirky things we need to do in order to function happily. We stopped seeking approval or denying that we needed to make accommodations in order for us all to thrive as a family. As parents we have come to identify that all behaviours have a function (equally valuable to remember this with a pre-teen as well as with a child with PDA!) and we see it as our job as superhero detectives to fathom out what any given behaviours are attempting to communicate so that we can collaboratively develop a strategy to overcome it. We involve our children in problem solving and make sure that they understand that we are human too and learning as we grow.
  • My work role (although very sadly became compromised by the overload of work involved in fighting for the right education for my son) taught me a lot which I have been able to transfer to our home life. Most importantly our way of combating negativity and seeing the glass as refillable. We know that we encounter hiccups and ‘life blips’ but these are all great opportunities to learn something. If we keep encountering the same kind of life blip, then it is my belief that there is a lesson in there somewhere that has not yet been learnt!
  • Another bonus from the support work I have been so passionate about is that you had to practice what you preach. In my case this was heaps of self care along with holding up a mirror to see just what I am accountable for and responsible for. I am accountable and responsible for my happiness, my behaviour and my sense of worth (as well as many other things). We share this with our children because no matter what the circumstances (even for children with a diagnosis that labels them as challenging) even children must come to recognise the power they have and that we are all responsible for our actions. It voids us of the ‘I can’t help it’ type excuses and makes us look at how we interact and communicate with each other as well as how we feel about ourselves.
  • We now have a very comprehensive and very specific EHCP (nearly finalised) despite being told a year ago that my son would not meet the ‘criteria’ for a plan. We have beyond doubt evidenced that the mainstream school he was at, very severely let him and us down and because of this, our local authority has been quite responsive to more recent threats to take them to court to ensure that my son receives the very best education available to him. My opinion about the alternative provisions that I so desperately tried to avoid a year ago has completely changed and I now recognise that ‘everything can change if you first choose to’. In our world, a year really has changed everything.

#PDAday

The letter that she wishes the senco had received; a therapeutic release of the emotional baggage hauled around since son was excluded

Dear Head Teacher

Today marks a national awareness day for Pathalogical Demand Avoidance (PDA), the little known form of Autism, which our son, your pupil was diagnosed with in January of this year. This letter has been thought about over and over again, but never sent. I write to you today in an attempt to assist you in developing a greater level of empathy for families such as ours in the hope that this will serve you better in the future in supporting the community who place a great deal of trust in you as Head and SENCO of the school .  

http://www.pdasociety.org.uk/blog/2016/05/pda-awareness-day-15th-may-2016-how-we-are-raising-awareness

When a family arrives at the heart wrenching conclusion that their child is somehow not conforming to the socially accepted expectations, whether this be through not meeting milestones or by displaying perculiar behaviours, they are extremely likely to have given this much deliberation. By this ‘deliberation’, I’m potentially talking about years worth of worry and discussions around how, as mere mortal parents, they may first find any other way to explain away their child’s differences and somehow compensate and/or fix the problems they have been encountering. By the time they have brought their concerns to your attention, it is extremely likely therefore, that they feel that they have ruled out all ‘other’ possibilities and believe me, this will have included whether or not their parenting was at all at fault. This will not have lightened the weight they carry on their shoulders, as many a parent feels responsible for conditions for which they have no reason to blame themselves for, but without the obvious presence of a medical diagnostic explanation for the differences which they have identified in their child, believe me when I explain, that they are nervous as they approach you for help. The manner in which you respond to their first attempt to request support really matters. It will go on to have such a huge impact on the family moving forwards. 

Whether they approach your school or staff with a well thought out letter or a badly timed by chance conversation in the play ground, please hear them. Remind yourselves that this parent has reached both their strongest and their weakest point simultaneously, something which will confuse them time and time again. Realise that them reaching out for support is a) the acknowledgement that ‘life’ has become perhaps too challenging for them to continue without discussing their concerns with ‘professionals’  and thus making them feel failures and weak, and b) the strongest thing any person can do when feeling scared, isolated and lost is to ensure that they no longer suffer in silence. Can you see how important your response will therefore be? 

Now as educational professionals, I am certain that neither you or your staff profess to be medical experts. You may have a wealth of experience of various children and their presentations of various conditions, but as I’m sure you will agree, no two children are the same and in many many cases, parents obviously know their children far better than any teacher may. It is for this reason that any judgemental response to a parents concern can be so damaging. Equally a dismissive response can have the  same impact. This presents a challenge for you and your staff but there is a simple, failsafe response which can be practiced to promote positive relationships between parents and staff at your school. This same approach will allow trust and respect to develop and will demonstrate that a collaborative, proactive attitude is preferred when in comes to overcoming challenges and difficulties. The key is to empathise; truly hear and believe the parents, having given them the appropriate time and safe space to share their concerns with you. A parent who feels that they have been listened to and taken seriously, will feel supported and will feel that they have a plan of action for the next steps. Now I appreciate that these next steps may well be ‘watchful waiting’ or simply monitoring the situation further, but it goes without saying, if the school has practiced effective empathy then the family will no longer feel alone in this task and most importantly, this will influence the child at the heart of the matter.

It would be hugely beneficial to families if you could proactively signpost them to other forms of support and information, there are council provisions designed to empower and inform parents who have concerns about their child’s educational needs, by highlighting these to families you will communicate that you believe they should access advice and are confident that as a school you will undoubtedly be providing the recommended support. At the earliest opportunity it would be brilliant if you could describe the various levels of support that you can offer as a school and perhaps describe the thresholds you feel a child would need to reach before you’d consider it appropriate to initiate these types of support. Parents who feel they understand the system and/or the support available are less likely to feel they need to ‘fight’ for services. Parents who feel supported by their child’s school are less likely to require intervention from practitioners outside of the school, who seem to solely have the role of ensuring that a family is able to access the support that school  should have been putting in place already. You can save yourselves countless meetings if you are upfront with parents and open about what you can and cannot do at any given time. It is widely known that parents are more than capable of requesting referrals on to other agencies and medical teams but it is also very clear that requests from education settings are somehow still taken far more seriously. As I am sure you are aware, waiting lists for specialist teams are lengthy. It costs nothing to you, aside from your time, to help parents with these referrals and the earlier the better, delaying simply costs the child in terms of their wellbeing and the school as in the mean time you are more likely to need more services for intervention. 

Your school, like many others, promotes exemplary behaviour and of course has high expectations for its pupils. Parents of  children with additional needs, challenging behaviour and disabilities also have high hopes and positive aspirations but fear greatly that their square pegged child may not fit your round shaped holes. These parents and their children need a supportive senco and team of staff who recognise difference and are flexible in their approach to promoting the ‘golden rules’. Your effort to demonstrate the lengths that you can go to accommodate and include all children will not go unnoticed. Physical disabilities are often better understood and more evidently acknowledged by means of adaptations to access for example, but as a school you have the greatest opportunity to promote a broader understanding amongst the youngest generations about invisible disabilities and additional needs. You can promote a healthy non judgemental approach so that families are not left excluded, you can encourage tolerance and empathy so that families are not isolated and you can lead the way in ensuring that whole communities are responsible for raising each individual child to be the best that they can be. 

Communication is vital. It should be open and honest and encouraged. Not only does it allow a parent to develop a sense of trust, it demonstrates efficient collaboration in attempting to resolve difficulties. Effective communication can eliminate the ‘us vs them’ battle. Where a parent has to fight for information, explanations and an adult perspective on events, it seems obvious that they are likely to come to believe that the school has a motive for withholding information. Home-school communication books should work both ways. TAC meetings require a senco and class teachers presence. Referrals require both a parents and a teachers perspective to be accurately portrayed. Without your support in communicating efficiently the child at the heart of the matter will suffer unnecessarily. 

Your school has used a disciplinary exclusion initially as a means of ‘teaching consequences’ and I have found many families, specifically those with children with PDA, who have experienced the very same. At the point of exclusion you were aware that our son awaited his ASD Assessment but sadly you were unwilling to await the results of this or any recommendations that followed before forcing our hand in moving our son on from your school. There is little I wish to rectify here as in hindsight the move on from your school may well have been the most healthy outcome for our son. However, there are points I wish to raise to  help you consider how your school can, in the future be more supportive of other families. 

Firstly, stating ‘prolonged period of challenging behaviour’ as the reason for the exclusion does not satisfy a parental curiosity about the nature of the events that led up to the point of arriving to collect a highly distressed child from your care. This was an ideal opportunity to convey compassion but instead you opted to ensure that you isolated both parents and child.

The manner in which you handled me upon arrival was cold and detached, and your decision to very swiftly move both my son and me on from the school premises put both him and me at further risk of harm and communicated very effectively the lack of empathy you were able to afford us. For the benefit of the other families who must continue to endure your services as Head and senco to their child, perhaps you’d consider a short course on updating your people skills?

The letter you provided about exclusions makes suggestions about contacting the board of governors but I note that unlike other schools you do not make the information about how to contact the governors readily available on your website and this presents a barrier for parents who may already feel extreme discomfort in contacting the school. Perhaps this is something you could rectify, especially as, if the complaint a parent wishes to raise is about the headteacher themselves, they are unlikely to want to request the governors details from the head or her staff.

Where a child makes allegations about being mistreated by your Staff and this is brought to your attention, first verbally and then formally in writing, it would be reassuring to parents if you communicated openly about the protocols which must be followed and provided copies of the child’s viewpoint being documented on your incident reports as well as copies of the accidents and injury logs. On the last occasion that this happened, you will recall that my son was taken for medical consultation owing to the injuries that he returned home with when I collected him as he’d been excluded, and never once have the school attempted to check up on his recovery from this nor provided me with any evidence that this was appropriately recorded. 

Not once since his initial exclusion has the school made any attempt to check in on his wellbeing, leaving me in no doubt at all that my sons needs had been the furthest thing from your mind and that instead the priority had become how you could move on the issue you no longer wished to have in your school. In the future, extending consideration and compassion to families would promote a more caring ethos of the school.

Making threats to permanently exclude a child with no evident legal grounds to do so, to me has seemed the most obvious form of bullying. As my son has sadly been left on role at your school, we have been required to rely upon you to complete referrals and necessary paperwork, which would have been better completed collaboratively with us as his parents, however you have failed to respond to my efforts to communicate with you,  you have refused to initiate nor attend a TAC and have left me in a position where I must make assumptions about your motivation for ignoring us. Should you find yourself in this situation in the future it would be hugely beneficial to the family if you could provide confirmation about why it is that you believe a child cannot return to your school and why it is that you feel you have the right to make threats about permanent exclusions? In our case, we cannot accept that every effort had been made to support our son in your setting, because, as you are very aware, we are yet to obtain an EHCP for him, and this of course would be the way we could demonstrate that you had attempted to meet his needs. Just as importantly, should you find yourself supporting a child who has an imminent assessment due, it would be hugely beneficial to the child if you could be as flexible as possible and resist making life changing decisions until you have the medical diagnostic information available to inform you.

At this point, you have been forwarded copies of the diagnosis paperwork but due to your personal absence from the team around our child, you have been sadly excluded from joining us on our journey to understanding how PDA impacts on our son and his ability to access his education. You are missing out on enhancing your schools knowledge and broadening your teams approach to supporting children like our son. We have incredibly knowledgable people supporting us now, who could help you see why your traditional teaching strategies are ineffective with children who have PDA. Not only this but they could show you the very techniques that do work. Choosing to opt out is your loss. You are paying for his time at the alternative provision but are playing no part in his onward journey, nor supporting us as a family to ensure he has an EHCP to be able to move on safely. Ironically, this means that the longer it takes to secure this, the longer you’ll pay for his time at the APA. 

PDA awareness day brought me the courage to compose this letter. But not the courage to send it. 

You see, the treatment we have faced since the day I first discovered an article about PDA, nearly five years ago, had been destructive to confidence and self esteem. Living with an undiagnosed child with PDA was isolating and devastating. Attempting to ensure your child’s needs are met, when you cannot describe their needs nor the approach that is required to support them, is paralysing. Countless appointments with professionals who knew nothing about PDA provided nothing but stress.  Being rejected and excluded in more ways than one nearly broke everything that had ever been important to us. 

Receiving his diagnosis in January has enabled us to educate not just ourselves but our son too, we will support him to become an expert on his condition. We are back in a position where we can work towards building all of our confidence and resilience levels. We are fortunately encountering passionate, compassionate, trustworthy professionals who no longer need us to squeeze our different shaped peg into restrictive holes. PDA awareness is growing. Once upon a time schools were ignorant about dyslexia, there’s hope for the future? We are moving forwards into the unknown but it’s far less scary than staying in what we knew, but knew did not work! 

I accept that one letter will not change one persons opinion or attitude. But surely it can plant a seed?

Moon cycles (the ‘something’ in the air) and PDA 

You know those days that start off crabby? The ones where you’d love to be woken (anything past 6am) by a delightful little being who would love a cuddle but instead you are rudely awoken by an iPad obsessed grouch who just wants his immediate needs tending to instantly. 

‘Feed me & give me the ipad’ … I’m starting to wonder if I did follow these orders, how long I’d get uninterrupted sat in the sun?

However I do not bend to the rudeness and instead start the day strong full of a calm upbeatness explaining how ‘we’ can have our technology time after our outing. It’s beautiful weather here at the moment. It’s the school holidays and I’m in parenting top form and adamant that time with mum will be fun and fulfilling and not wasted on screen time. 

But there’s definitely ‘something in the air’ that I can’t put my finger on. It’s been here about the last 3 or 4 days. Mild at times. More severe at others. But most definitely overlooked until just a moment ago, and dismissed as just one of the joys of PDA. But i’ve just read a post on a very helpful PDA group from a fellow mum who remarked about the full moon… and there it is…the slap in the face of a reminder that as i’ve seen umpteen frickin thousand times before, the MOON plays havoc on my pda’er!

Somehow daddybear and I had even shared a conversation about the position of the moon last night but both neglected to acknowledge the link between this beautiful bright (almost) full moon and our niggly, moody pda’er. 

He isn’t always THIS grumpy. Sure he struggles with many a thing that drives us insane and cause him distress, but he’s not always this grouchy. 

The moon plays a role and I seem to neglect the power of this phenomenon each and every time!

Today’s moon moments included, being severely pissed off that mummagrizzlybear was not offering bacon gaps for breaky, volatile monopoly gaming, equally irritable about ‘waiting’ for friends to arrive and then ‘the traffic’ being in our way en route to our outing and then a unwarranted days worth of grouchyness towards our friends youngest child as well as an inability to engage socially with people he can usually ‘cope’ with. Now some of these things seem entirely ‘normal’ (of parenting joys) and you may only get this if you’ve experienced it…but mumma just knows when it’s more out of the ordinary and something is up! 

I didn’t discipline in the same ways today as I may have done a week ago, because something just told me another force was messing with him. 

I know the moon has taken its toll as baby pda’er bear is currently snoring away on my shoulder (8 pm ish) instead of sharing in the ‘boys-nite’ star wars movie. He’s not hurt anyone today or fully melted-down but it’s been hard work for him. He’s shattered. I’m proud of his achievements. 

The moon revelation reminds me that each month I say I’ll make some kind of a chart to track the moods and cycles to compare and analyse and then I sit here and smirk because a) I’m not really going to do this and b) because I already can predict the findings! Not only this, but I have also thought many a time about also tracking PDA difficulties with my own cycle and although with this too I am convinced there is a link, a chart tracking mummagrizzlybear’s hormones alongside challenging behaviours will probably only lead to negativity and self-criticism!

Scientifically of course i’ve attempted to find research to quantify the lunar effect theory  (I.e. I have googled it!) But in the absence of anything concrete I also remind myself that ‘their’ research was probably not done on a community full of those with varying ASD forms. 

So the next time I hear anyone utter the words “there must be something in the air”, I plan to first check out the lunar cycle before critiquing parenting because for me there really is a link!

Dear mum

A poem to ‘that’ mum

Dear special needs mum I saw your eyes, I know you were trying so hard to hide, to hide the hurt, the struggle, the pain, you see I know this because i’ve suffered the same.

Dear warrior mum who battles so strong, to ensure her children’s needs are met and they feel they belong, you fight for understanding, you fight for their rights, you’ll do this each day and long into each night.

Dear struggling mum who is torn between kids and work, stretched so thin without any obvious perks, striving to be a good role model, keep a happy home and of course being that trusty companion at the end of the phone.

Dear tired mum who gives so much care, has little support but will always be there, there for her cherubs, her family, her friends and continually giving because her love never ends.

Dear inspirational mum, the juggling goddess, managing your life’s hectic duties really does impress, you cleverly balance all that is demanded, from form filling to meetings and unexpected dramas, she makes it appear that nothing alarms her.

Dear thoughtful mum, who worries and fears, of the hurdles likely to follow in the next 5 to 10 years, always looking ahead, striving for better, preparing for change and softening any blows, without this where your children would be, who knows.

Dear under-appreciated mum holding back tears, sad from the battle you faced today but have handled for years, painting on that smile, constantly dusting yourself down, so bravely aware you’ll get no thanks but you must not reveal your inner frown.

Dear unnoticed mum, standing at gates, desperate for others to truly know your fate, ignored by many, shunned by some, because ignorance breeds and ‘special needs’ is more scary than fun.

Dear mum who knows best, and sees all the glory, of their special need children and are brave enough to share their story, to those mums who reach out to others, for those daring to speak out loud for those endeavouring to raise awareness, we are grateful for you in our crowd.

Dear insightful mum, who knows all the up- sides, of living with ‘difference’ and refusing to hide, to those mums embracing, educating, accepting, knowledgeable and ever learning, because of you, our children are blessed and safe and will never be left isolated or yearning.

Please don’t ever feel alone. Connect with me on Facebook if you’d benefit from support of any kind. I won’t have all the answers but you’ll not be alone and perhaps together we’d help each other discover a broader support network.

https://www.facebook.com/mummagrizzlybear/