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!


Sorry seems to be the hardest word

Tips on saying ‘sorry’ – modelling to children

Being a big believer in humility, acknowledging faults and identifying areas we can improve on I was freshly inspired this morning to read this rather long but very worthy read on apologising.

I’ve of course been greeted with ample opportunity to introduce the 4 step principles with my baby bears all in one afternoon. Being children aka ‘sponges’ they’ll of course remember the 4 steps and I shall bask in my newly acquired ‘perfect parenting’ status for all of a few seconds…before I go bat-shit crazy once again! All jokes aside, when prompted, they both repeated the 4 steps I’d encouraged. 

If I’m honest I may have been intentionally ‘calmly communicating’ the 4 steps to my cherubs in the presence of daddybear hoping that he’d too take on board the principles. 

Sorry often goes unsaid or is misused to excuse or move on from negative behaviours even amongst adults. I want genuineness. I want to hear what is going to change as a consequence of any person admitting fault. I need to know that the ‘culprit’ knows what impact they have had. This is how I recognise sincerity in a decent apology. Yes. I’m making this harder. Yes. People will no doubt let me down until they develop this skill. But yes we all deserve genuine loving consideration and an apology should not be insincere or a ‘get-out’. 

As adults (in our relationship/ household we have 2 adults- supposedly) we can model effective caring communication to encourage babybears to do the same. The more it is witnessed by babybears the more likely we are as adults to see it. 

4 steps are:

1) direct the ‘sorry’ to the person by name

2) acknowledge what you did wrong. Show that you know how your behaviour affected them.

3) explain what you would do next time or how you could make things better. What will you do to improve the situation?

4) ask for acceptance of your apology

The childs Tips on ‘going places’ and ‘doing things’ with PDA 

…and a mumma’s learning from the day!

This post comes to you straight from the mouth of our 7 year old baby bear who was diagnosed with PDA.

We’d had a brief meltdown over mummagrizzlybear buying the ‘wrong cheese’ and therefore ruining the prospect of cheese on toast. In mummagrizzlybear’s head this meltdown was not a great indicator that we’d successfully get around the supermarket unscathed. However with minimal intervention baby bear uncharacteristically calmed and joined me at the table for the wrong cheese on toast. (Feeding before shopping is a must). I used humour and mocked myself for getting such silly cheese and planting the seed that he could select and  buy just the right cheese at the shops. As we were compliantly engaging in reasonable conversation I dared to open up a new discussion. 

At a recent meds review the psychiatrist was keen to get to understand baby bears perspective and help him learn to be able to know when he might need some xtra medicine to help him cope. (He is on a very small dosage each night and a prescription for an ‘as and when required’ small dose also). On mothers day he’d yelled out “you should have known I’d need medicine to be able to do this” and this was my first eye opener to his ability to predict (and over worry about) challenges. I want to know more. I want to put this to good use.

So I asked. ‘Do you think going shopping is one of those things you find tricky?’

He replied straight away. ‘It’s leaving the house and getting ready that’s tricky’. 

‘Ah, I see, so I guess that explains why it’s tricky to even go to places you want to go?’

‘Yea, once I get there it can be ok. It can even be fun. As long as people keep out of my way.’

‘So how can I help you get ready to go out?’

‘That’s easy’, he says ‘just make it fun, like, let’s hop in the car we are gonna have fun in the trolley’ 

‘Oh ok’, I say, ‘I’ll practice that more’.

Lunch passed our lips with little mention of the wrong cheese again and I wondered how much the meltdown had really been about getting ready to go out. 

Next I needed to get him ready to leave (socks and shoes are a big issue). I tried reshaping my usual request type demand but it came out wrong. He smirked at me. ‘You forgot mummy’. I say, ‘you’re right, I did, show me how I could have done it’. Excitedly he giggled and shouts ‘we need socks so we can go put treats in the trolley’ and runs upstairs grabbing socks and independently pops them on!

Before heading out the door I said ‘hmmm, it might be cold out, I’m taking a coat’, he said ‘my PDA wants me to not take a coat , I’m taking my comfy jumper’.

The shopping trip was not without hiccups but in an effort to learn from each new day I’ve concluded that;

1) meltdowns will not always be about the obvious nor the thing they are ‘frustrated with’ in that moment.

2) where possible less is more when a meltdown is occurring. If safe to, avoid engaging in it..back away and remain calm. Talking to them, over them or at them exasperated things

3) use calmer opportunities to open up lines of communication. Ask what it’s like for them? See if they know of a better way you can help? Be interested in their suggestions. Talk until it’s clear it’s time to move on. This might be very short bursts but in our case our pda’er really holds on to info for a later date.

4) use humour. Definitely definitely use humour.

5) plant seeds. Let them come up with the ideas.

6) do not set yourself up to fail by being too rigid about the expectations and rules

7) shift the focus from the request or the demand and make it about the ‘fun’ or next thing that will follow

8) offer reassurance and humility, we all need comfort and to know that we can all get it wrong sometimes

9) be prepared to move on without successfully getting what you wanted but, return to it, try a new tact, you’ll get there.

10) be a team. Make yourself available to them and join them in learning about how their condition affects them.

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.

Even good experiences can contribute to overload.

This just hit the nail on the head and helps me understand why even ‘fun’ activities they want to do can cause meltdowns. Thank you itmustbemum

It Must Be Mum

By Rosie and Jo’s mum.

It took me a while to get my head round these two ideas:

1. My daughters can be enjoying activities that they have chosen to engage in, want to carry on with and benefit from in many ways while still feeling stressed and overloaded by them.

Playing with friends at the park after school is a great way for other children to wind down but for us it didn’t help. In fact the end-of -chool meltdown would be worse if it had to wait until after a visit to the park.

Going swimming is fun and she might never want to get out of the pool but, if there is more than a handful of other people in there, we have to limit the length of the session to avoid tears in the changing room.

Spending time with cousins who you don’t see often is a…

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Holding up the PDA- Mirror

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

Mummagrizzlybear found this observation a little bitter.

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

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

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

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

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

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

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

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

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

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

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

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

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

3 positives

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

Rarely #ordinary 

We are all so uniquely ordinary in our own rights

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

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

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

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

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

☆ 3 positives ☆

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

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

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