A note from Daddy

Dark clouds try to cover your world for you
They come and go, at less than a moment’s notice
There’s no forecast for us or you, dear daughter
Yet your sunshine glows through, always

You understand more each day, as do we
Our lives together, never apart, safe and secure
Every second, minute, hour, day and month
You never need worry about that at all

A white rose, growing your way, always blooming
Stunningly beautiful, radiant in your look
Surprising us with your thoughts and smiles
Forever in our hearts, you’re our passion

Deep as an ocean, broad as the sky
As powerful as a glimpse into paradise
You’re our inspiration, our vision
This is our journey, always together, never alone

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A note on tough times

Today has been a tough day.

Maybe it was the heat, or my hormones or maybe we’re both emotional about Great Granny passing away not long ago. Maybe you’re getting a cold or still recovering from your birthday being over. Maybe it’s your wobbly tooth or something else I’ve not thought of yet. Or maybe it’s all of these uncontrollable things which have sent your very sensitive senses into overdrive and raised your anxiety because your environment isn’t just right, isn’t just how it needs to be for you to cope with life today.

You’ve had big reactions and equally big emotions about everything. You’ve reached overwhelm and needed more hugs and to hold my hand more times than I can remember. Your tolerance and patience is low and your anxiety and need for control is high. You’ve needed my constant attention and company and struggled to do most things. You’ve had real difficulty processing my words and turning your thoughts into sentences I can understand. You’ve stammered and repeated yourself a lot. You’ve cried, laughed and growled. You’ve climbed, jumped and rolled on furniture and on me. You’ve panicked when I’ve needed to do something else and been extreme in your attempts to make me stop. You’ve been demanding and controlling and at times oblivious to what’s around you.

Today has been a tough day and I had to dig deep to find enough patience and energy to support you well but I understand and I love you just the same as always and am so proud of you. Your life isn’t easy breezy like it is for lots of other 7-year-olds, like it is for a lot of your friends. There’s so much you cannot manage but you don’t complain, you are just you and totally accepting of the way things are and inspire me to be too.

Today has been a tough day but has shown me we were on the right track with your environment and life conditions being suited to your needs before the ‘out of our control’ stuff of late unavoidably struck our world. Because it hasn’t been this tough for a while. Any concerns I’ve had about getting things right recently were laid to rest today.

Today was a tough day but we got through it and found assurance, acceptance and love. So much love.

A note on birthdays and when solutions become demands

Birthdays have always been overwhelming for Little Miss M and not in the typical becoming over excited and inevitably over-tired-from-the-excitement way a lot of children do. She does get excited and tired (exhausted in fact) but she also worries. She worries about every detail of the day, about how long she has to wait for the day to come and about it coming to an end and not just on the day but for quite some time before and after. She also cries, a lot. She experiences big emotions and cries multiple times throughout the course of the day and celebrations over seemingly small details or when there are no more presents and I used to worry that she was ungrateful or spoilt so would gently remind her to be grateful for what she had, which unwittingly put more demands and expectations on her, making it worse.
Since discovering PDA, we have learnt that she’s not ungrateful or spoilt. She cannot handle uncertainty or things not happening how she imagines they will. She needs to feel absolute control and certainty of herself, her environment and of situations otherwise extreme levels of anxiety overwhelm her causing this behaviour.

Birthdays, traditionally, are filled with uncertainty and demands so cause extra anxiety than normal.

Birthday uncertainties include:

  • Surprise presents – traditionally we’ve kept gifts a secret for a surprise on the day but this leaves Little Miss M in a constant state of uncertainty because she doesn’t know what to expect or whether or not she’ll be given that special thing she really really wants.
  • Decorating the house with banners and balloons as a birthday morning surprise can be unsettling (even though she loves decorations) because it eliminates the security of the surroundings being familiar (likewise, taking them down can too when it’s unexpected) she also has very particular ideas of how something will be and waking up to things looking different to what she expected can be overwhelmingly disappointing.
  • Changes to routine and more people visiting than usual leaves her wondering what will happen when and what will people do/say.
  • If we have a trip planned to somewhere new, it’s unfamiliar and again, she doesn’t know what to expect.
  • Will the weather interfere with our plans? *

Extra demands include meeting the expectation to:

  • say thank you for gifts
  • to like gifts
  • to smile for photos
  • to blow out candles on cue
  • to be well behaved and happy

All of this leads quickly to overwhelm.

This year was Little Miss M’s first birthday since learning about PDA and armed with the understanding we’ve gained about her PDA and looking at it from her perspective, we involved her in all the preparations so she felt in control of this aspect of the day. She saw her banners, balloons, wrapping paper and card when we got them and told us how she’d like the room decorated (which we did exactly as she said), she knew what presents she was getting from most people and she planned what would happen on the day and when. We tried to relax as much as we could on expecting thank yous and instead I made sure I said it, even if she didn’t. [I try to relax all my expectations generally now and find it makes life much calmer and happier for me and Little Miss M but will go into that more in another note]. We only took a few pictures when she wanted them and tried really hard not to say “smile” when we did. We did the cake (which she chose) when she was ready to and asked her if she would like candles or not (she did and again she chose them).

With these adjustments and us being mindful of her anxiety levels before, during and after the day and being flexible to meet her need for control, overwhelm was much slower to build and much less frequent than in previous years.

She still experienced challenges and difficulties. Demand avoidance and anxiety were still present because that’s inevitable with PDA but it was mostly manageable. She used her ‘go to’ coping strategy of imaginary role play a lot to alleviate anxiety. This works because she has absolute control of her imaginary world. She slipped in and out of character when she needed to and at times needed us to participate too, telling us what to say and do. There was still anticipation anxiety in the build up and transition anxiety at the end of the day and not wanting it to end because unfortunately nobody can control time or the rate at which it passes and overwhelm, with lots of tears and anxiety, did occur at the end of the day because of this.

I learned a valuable lesson that night. I finally learned what to do and what not to do when I can’t offer a suitable solution to fulfil her need for control. It was already midnight and the day had come to a natural end. These circumstances which were out of Little Miss M’s control and the cause of so much anxiety were out of my control too and I realised everything I suggested to try and calm her (we have photos to look at and remember the day, you have new toys and games you can enjoy playing with tomorrow, we can go back to LEGOLAND in July when Daddy is on holiday again) was actually making it worse.

Then the penny finally dropped – my suggestions were in fact perceived as demands and were all adding to her increasing feelings of overwhelm so I decided to stop suggesting and listen to her express herself and ride it out with love, understanding of her anxiety and need for control and with patience. So much patience. I acknowledged her feelings and reassured her that it’s ok to feel them – showing her I love her no matter what and found that alone helped her to eventually be free from the negative effects of those feelings and she regained enough control over herself to be calm again and eventually fall asleep.

There are times when Little Miss M does need my help in finding a solution but I’m going to be more mindful from now on about when that is helpful and when it becomes a demand. And I’ll continue to show her I love her at all times and through all the challenges so she can love herself entirely.

It took her a few days to transition back to normal life and recover from her birthday celebrations and she went through phases of hyperactivity and being very intensely demanding and controlling while her anxiety levels reduced. It took lots of patience and understanding from us and seeing things from her perspective. But we made it through and it was a happy birthday and she remembers the positives of the day when asked, not the tears and anxiety.

* Oh and we didn’t let the rain interfere with her plan to play in the splash park! The water was freezing cold and we were the only ones brave enough to venture in but we had it all to ourselves which she loved and some of the best memories come from doing crazy things!

A note on PDA Action Day

The PDA Society’s PDA Action Day is on the 15th May each year. It’s a day dedicated to raising awareness, increasing acceptance and taking action about PDA. We didn’t know about PDA last May so this year was our first PDA Day.

We liked and shared so many fantastic Facebook posts using the #PDADay and Little Miss M wrote her own post about PDA to share with all of our friends (some even started following The PDA Society’s Facebook page after reading it which she was thrilled about).

We celebrated the awesome PDA community, who we are so grateful to for sharing their insight, experiences and support; the very fact Elizabeth Newson identified the condition at all and began the vital research to understand it and how it can be most appropriately supported; the wealth of information available today about PDA; the experts who are leading the way for correct assessment, diagnosis and support; the bloggers, campaigners and fundraisers working hard to increase awareness, acceptance, understanding and support and encourage changes in attitudes and policies; the positive changes all of the above has had on our life and finally and most importantly, we celebrated Little Miss M and all her amazingness. She has totally embraced her PDA and although she recognises her difficulties she doesn’t see it as a barrier but rather a way to be unique.

PDA can be a debilitating and challenging condition to live with and alongside and there’s still a long way to go with universal recognition, understanding and support but by focusing on the positives as often as we can we hope to keep moving forward towards the best outcome possible for Little Miss M.

PDA Day 2017 left us feeling so grateful, supported and inspired. Grateful to everyone who has written or talked about PDA and made it possible for us to understand Little Miss M’s mind better. Supported by all the people who understand and all the people who want to understand. And inspired to take action and share our experiences with PDA and what we’ve learnt and continue to learn on our journey, via this blog.

Here goes…!