A note on The PDA Society Enquiry Line

We recently received some excellent advice from The PDA Society and I would highly recommend that anyone in need of some guidance or advice contacts them too. The process was so simple and made the world of difference.

We had talked at length about how to help Little Miss M with a particular difficulty she’s experiencing but felt overwhelmed and unsure how best to help her or even if we could.

So I decided to contact the PDA Society for the first time and see if they could offer any advice or insight to bring clarity to the situation. We emailed their Enquiry Line Team with our questions and some background information and a couple of days later received a detailed and lengthy reply with very clear information and advice.

Not only did we gain clarity from the advice given but we were offered a very clear plan with detailed steps to take in order to best help her. As a result we feel more confident and less overwhelmed.

The PDA Society Enquiry Line is run by volunteers who are all parents of children or young adults with PDA. In my opinion, their knowledge is exceptional and that came through in the advice we received (which rang true with us) and the way everything was broken down into manageable and understandable chunks. If you or anyone you know is in need of clear and concise PDA related advice, please consider contacting them. I’m so glad we did and am full of appreciation for their help.

 

 

 

 

 

A note on stress

When Little Miss M’s anxiety levels are particularly high she becomes very demanding and intense. She’ll want my constant attention whether it be by playing her games or watching her do something, she’ll need to be in constant contact with me, either holding hands, sat extremely close, her leg across my lap etc. or calling out to me constantly to do something or to come when I move to another room. She’ll need everything done for her and will constantly ask for things in a particularly demanding way.

She does some of these things in moderation most days as anxiety fluctuates but when they are particularly obvious and intense, I know it’s a sign that her anxiety and stress levels are very high and she’s in survival mode and only has enough executive function and energy to express her needs in this way.

During these times my stress levels increase too, my patience is stretched and it’s exhausting. The lack of personal space is difficult as well. It’s hard to stay calm when all this builds up inside so I try and express how I feel wherever possible. Saying it out loud or writing it down is good, sharing it with others is even better and respecting my natural feelings to the intense pressure I’m under is so important. It’s only natural to feel stressed under intense pressure after all and acknowledging that and giving myself a break for feeling it helps me to more easily express it, which allows my stress to reduce so I am in a better state of mind and can continue to support Little Miss M to deal with her own natural feelings to her own intense pressure so she too can reach a better state of mind.

You see, she’s only doing what comes naturally to her very specific make-up, just like I am. Her feelings might display differently to mine and not in conventional ways and may be triggered more often than mine and by less obvious pressures but they are no less real and deserve the same respect and compassion mine or anyone else’s do.

I value my moments of stress because they give me a glimpse into how Little Miss M feels and help me appreciate how difficult things can be for her when conditions aren’t just right for her needs.

The stress caused by the pressure to be constantly available for her during this time and the lack of personal freedom I feel, must come close to the pressure she feels from everyday things which are out of her control.

I see life through her eyes for a moment and this inside knowledge serves us both well. She’s better understood which leads to more compassionate support for her and I apply the compassion I have for her to myself, ensuring my own feelings are honoured and respected, making everything easier to deal with.

There’s lots of other ways to combat stress but, for me, this mind-set is the most beneficial. Living with PDA can be challenging and stressful for both parent and child but acknowledging and respecting these natural feelings and being able to express and share them with compassionate support enables us to push past the resistance stress can cause in the moment and using my own experiences of stress to see my child’s perspective keeps the compassion flowing for her and for myself.

 

 

 

 

A note on role play and pretending

Little Miss M has always loved imaginary play and going on elaborate adventures in her imaginary world. “You be this and I’ll be that” she’ll say multiple times a day and she’s always the director, telling us exactly what our roles are and how we should play them. She also imitates people and characters, really becoming them. This can also extend to animals.

It started when she was very young with books. She’d immerse herself into the stories and always wanted to act them out again and again. Then came the usual role play young children love as they make sense of the world and pretending to be favourite characters. It became increasingly harder to finish her imaginary games though or go anywhere or do anything without role playing as characters.

As she got older the intensity of this type of play only grew and we were finding more and more of her time was spent in fantasy land and this is where she seemed most comfortable.

Her imagination threw us off the scent of autism initially because we thought it wasn’t typical for a child with autism to be so imaginative in their play. When we read that one of the defining features of PDA is comfortable (sometimes to an extreme extent) in role play and pretending we knew we were on the right track.

Little Miss M once said that pretending to be a character is easier than being herself because she knows what to do as the character and what will happen. We realised that all of the situations she imagines/pretends to be in are all copied from things she’s seen others do (in films, TV programs, YouTube videos, computer games and books). The things she pretends to do change as she sees different things which she connects with but the ideas and scripts are all borrowed from what she’s seen and it’s so important that the imaginary situations are all familiar to her and within her control.

We’ve come to see role play and pretending to be in an imaginary world as natural coping instincts for certain things she finds difficult.

Escaping into fantasy by choosing to be a certain character or role playing a scenario when she feels a loss of control or when in an unfamiliar place or situation gives her the feeling of control back because she has more control of her imaginary world than she does the real world and it feels safer. Being someone else also removes her from the thing she finds difficult to do because it’s not her doing it.

Role playing/imitating what she has seen is more comfortable than not knowing what to do as herself, which is actually quite confusing for her in some situations due to difficulties with social imagination, as is knowing what others will say or do or what might happen next, so assigning roles to people and ‘directing the scene’ is a way to know what others will do and what will happen and have a sense of control.

Pretending is also effective in demand avoidance as a way to excuse herself from demands or as a delay tactic. And on the flip side of this, we’ve also found that turning a necessary demand into an imaginary game makes it much easier for her to do and using role play to introduce or explain something to her is effective.

Not all of her imaginary play is her way of coping with difficulties, sometimes she just wants to play a make-believe game because she loves that type of play but if she cannot play it or others won’t play along to her specific directions, she will become anxious from the loss of control which can display as anger, annoyance or becoming tearful and upset. This can make being around others who don’t want to play along with her specific ideas quite difficult to manage. It can also be difficult as an adult joining in with her imaginary ideas and games exactly as she wants us to but we know that doing so will help keep her anxiety levels low which in turn enables her to cope with more.

When I initially realised that she used role-play and fantasy to feel safe and in control and I recognised it was often a sign of her not feeling comfortable in real life situations, I felt sad that she had to do it to cope but now I see it as a really positive thing. It enables her to cope with difficulties and situations which would otherwise cause panic and that can only be a good thing and as it gives her a sense of control, she is more able to dip in and out of situations and enjoy more elements of them in her own unique way.

After writing this I asked Little Miss M if she wanted to add anything and she said:
“My imagination helps me survive because my imagination is my life”.

A new strategy we’re using to distract from anxiety and feel in control

I came across this problem solving idea via GoZen: Anxiety Relief for Children last week and thought carefully about how to introduce it to Little Miss M as a tool to help her with any difficulties or ‘problems’ as she calls them. Being mindful of demand avoidance, I decided to mention in passing that I’d seen a cool way our fingers can help us with problems and she really engaged with it.

We drew around a hand each and set to work thinking of our biggest problem solving strengths (I explained this to her as things we’re really good at which can help us with problems). In true Little Miss M style she made it her own by adding finger nails to the hand and drawing pictures to represent her strengths until she got to her thumb, then she wrote the word (kind, spelt cind). I wrote my strengths down too.

This is what she came up with

Finger Strengths
From little finger to thumb:

Imaginative
Good ideas
Being active
Creativity (with her drawings)
Kindness

It was a wonderful insight into the strengths she sees in herself and she was delighted with herself for writing the word cind which gave me a lot of joy to see as did her awareness of the things which help her when faced with problems. 

I explained that whenever we have a problem or difficulty with something we can choose one of our finger strengths to help us solve it. She came up with this little saying which happens to have 5 words too (one for each finger) “choose a finger to help” and enjoyed chanting it while moving her fingers along with the words. She really loves it when she can link numbers to things.

Since then, there have been a few times where choosing a finger strength has been really helpful. Here are a couple of examples:

The first time we used it, she wanted to watch a particular set of adverts she remembered being on a DVD but didn’t know which DVD they were on. She started to panic at this uncertainty, overwhelmed by the fear of not knowing. I started wiggling my fingers and said “I wonder which finger strength could help with this problem” and repeated her chant. This distracted her from the panic and made her smile. She named each of the strengths but couldn’t decide which would help so I suggested maybe the ‘good ideas’ finger might help this time and she said “I know! I could try all the DVDs until I find it”. “What a good idea” I said and as we tried each DVD she was much more calm and in control of the situation. It took a few tries to find the right one but each time it wasn’t the right one she remained calm and focused on trying the next one. Usually, if I’d come up with the solution, she would have panicked more with each failed attempt. This strategy really did give her the feeling of control.

We next used it a couple of days later when she was finding it particularly difficult to go to bed. It was approaching 11pm and demand avoidance was in full swing. She not only didn’t want to go to bed, but didn’t want me to go either. I explained to her that I was very tired and really needed to go to bed soon and asked if one of her fingers could help solve this. She was keen to use a finger but didn’t know which one could help so I ran through them all in a silly and expressive way and together we eliminated the ones which wouldn’t help and were left with ‘good ideas’ and ‘kindness’. She then said “I know! Seeing as you are so tired, I’ll be kind and let you go to bed now while I finish what I’m doing and then I’ll come up”. “That’s very kind” I said. She joined me upstairs about 10 minutes later.

As with any strategy, I’m careful not to over use it because the likelihood for success will reduce if it’s used too often and only use it for Little Miss M’s benefit (when she is distressed or panicked by something, when she wants to achieve something but is struggling or with necessary demands).

So far though, this new strategy seems to help distract Little Miss M from her anxiety and gives her a feeling of control over a difficulty or demand and I love that it’s so simple and the approach used can easily be adapted and tailored to suit each child.

A note on the need for control and certainty

Demand avoidance isn’t the only difficulty arising from the anxiety-driven need to be in control which encompasses PDA. Any uncertainty or loss of control is perceived as a threat of danger that causes just as much anxiety. As a result, Little Miss M cannot handle uncertainty or things not happening how she wants them to; she needs to feel absolute control and certainty of herself, her environment and of situations otherwise anxiety and emptions overwhelm her. The level at which they overwhelm her fluctuates as her overall anxiety levels fluctuate.

Things not happening according to her very fixed ideas and uncertainties around a situation cause her anxiety to escalate quickly to a point where she becomes overwhelmed with emotions the instant she realises it has happened.

I imagine a situation where I’m the most worried I’ve ever been about an outcome, or a situation where all my hopes and expectations are pinned on a particular outcome, something I dreamed of or wished for and it doesn’t work out and I feel the most disappointed and let down imaginable  – that helps me begin to understand how every single uncertainty or thing which doesn’t happen according to her fixed ideas feels for Little Miss M but add to that the fear of not being in control and not understanding her emotions and it’s easy to see how easily overwhelmed she can become.

This can display as anger, frustration, fear, panic or intense sadness and can be directed at other people, objects, herself or the world in general. Things like a game not working on her tablet, the Wi-Fi dropping out, other people not doing what she wanted them to do or doing things she didn’t expect (including using a different cup than she expected for a drink or not choosing the pair of socks she had in mind) or not being understood or able to say or do what she needs to say or do, not knowing how long something will take to arrive in the post or where a missing item could be as well as numerous other hiccups and uncertainties in everyday life.

These situations can only be solved by putting things right according to her fixed ideas of how they should be and the uncertainty during the time it takes to put it right is unbearable for her, her anxiety soars; she can’t concentrate on anything else and cannot rest until she is satisfied with an answer or solution. It’s during these times we really see the sudden changes of mood referred to as Jekyll and Hyde moments. She can suddenly explode with intense anxiety and emotions when something goes wrong and can become calm or switch to happy and go back to what she was doing almost as quickly when they are put right, though she is left noticeably fragile for a short while after particularly upsetting situations and needs more attention from one of us to feel safe again. This is displayed in her being more demanding for a short time while she regains a sense of control. Some things though just can’t happen how she wants or imagined them to and they can easily turn into sheer panic as she realises they are out of her control.

This sheer panic caused by the uncontrollable and uncertainties is the biggest difficulty for us all. So many situations are out of our control and they really rock her world. She has no natural instincts to protect herself from the threat which her brain perceives at these times, unlike the threat of a demand which triggers demand avoidance or the threat of the unfamiliar which triggers her escape into fantasy, the threat of the uncontrollable and uncertainty has no natural coping strategy and she’s left in her anxiety as it increases beyond what she can handle so panic sets in. As parents we want to protect our child from this state of mind and reassure her to make it go away but unless it’s something we can fix with exactly what she needs, our words and comfort aren’t enough to stop the panic. Her need for control turns any solutions which aren’t exactly what she needs into demands which she’ll resist or we don’t have any solutions anyway because we can’t possible predict the future so don’t have the answers she needs. We feel powerless to help because she avoids the demand to do the things we know will help calm a panic attack and no distractions will deter her from her course of thinking so we just have to ride it out with her until she regains enough control over herself to be calm again. She is gradually becoming able to talk herself round. It takes a while but eventually she will tell herself something which calms the panic, it might be a fantastical idea which she believes will solve it or she might tell herself not to worry about it. Whatever it is, she has to come to that conclusion herself and that’s not easy.

Situations and events can trigger this panic but they can also come out of nowhere when she’s feeling particularly anxious. She’ll start panicking about all the random things which are out of her control in life. Things like a toy she lost years ago, whether or not we’ll live in our current home forever, who will die first in our family and getting older and all the changes around this because they are all so out of her control. It could be anything which she becomes aware of having little or no control over or cannot be certain about but time passing seems to be one of her biggest worries when anxiety is high.

So how do we help her with this?

We try to pre-empt potential causes of overwhelm and prepare her for situations which might be out of her control, explaining we don’t always know what the outcome will be but it might be this or that, leaving things as flexible as we can when we know they can’t be controlled otherwise she’ll expect things to happen exactly as you say. If we sense that she is expecting something to happen in a fixed way or we know something might not be as she’d expect, we explain why things might not be able to happen in that way so she is prepared and deals with any anxiety about it beforehand (which is usually less overwhelming than discovering things aren’t as she thought in the moment). We also look out for situations which could trigger her and decide whether her anxiety is up to how out of her control they will be and may or may not take part or go.

We always try to remember her reactions are a sign of her panic and anxiety, and support her calmly and with understanding through these difficult times. And on occasions when one of us is on the receiving end of her anger, we try not to take it personally and support each other with remembering that she does not naturally know what other children know about how to behave and is very confused by her emotions. Autism affects how she understands and interacts with others and it will take time and creative thinking to help her with this.

As far as demand avoidance will allow we are doing what we can to try and make the emotional overwhelm and panic she naturally feels from uncertainties and the uncontrollable less distressing for her and helping her understand her emotions better and how she can express them more calmly.

We talk indirectly about how we can express our emotions safely and calmly by using role-play and talking about other people’s behaviour (often characters in books, films and TV programmes) when they feel similar emotions or draw comic strip conversations with her to help her understand how others feel and have learnt a lot about how she feels in certain situations while doing these also. We adapt how these are done to allow Little Miss M as much control as possible over doing them while still getting our message across. She might choose the colours we use and add background details to the drawings and story and we go with the flow to keep her engaged while carefully keeping the main focus on the subject we are trying to explain.

We acknowledge and validate her feelings around moments of high anxiety and panic and show her that we love her and encouraging her to love herself at these times. This plays a big part in preserving her self esteem so she doesn’t get into a cycle of feeling more anxious about being anxious

We hope that she’ll start to feel more in control of some of the unavoidable hiccups she encounters by building up her knowledge of how to resolve things and this will reduce the anxiety she feels when they crop up.

We plant seeds by saying out loud what solutions there are to problems (ours and hers) so she indirectly hears them and can gradually pick them up and learn them for herself.

We ask her if she can help with ideas to solve ‘our problems’ (things we really know how to solve but pretend we don’t). Sometimes she chooses to help, sometimes she doesn’t but we never insist. Often we’ll just ask the question out loud and see if she offers advice.

We empower her with the knowledge that she has great ideas and can overcome anything. Little Miss M likes to hear that she had a great idea but I know not all children with PDA can take this kind of praise so an indirect approach (telling another person) may suit them better.

While writing this note we came across this idea to help with problem solving and are giving it a go. You trace your child’s hand on a napkin or piece of paper. Have them think of five of their greatest strengths and write (or draw) one on each finger and when they are faced with an adversity, they can pick a finger and use that strength to begin resolving the problem. I’m hoping this will be a good distraction from the anxiety and help her to feel more in control of solving problems. The strengths Little Miss M came up with were using her imagination, having good ideas, being active, being creative with her drawings and being kind.

PDA is a lifelong condition and the need for control and certainty won’t disappear but our hope is that with this support and guidance and all the work we’re doing around reducing her overall anxiety by keeping demands to only necessary ones, she’ll be more able to cope with uncertainties and uncontrollable situations over time and with age so they are easier for her to deal with.

PDA Society’s PDA & Mental Health Webinar

The PDA Society’s PDA & Mental Health Webinar really was excellent, especially the Q&A section. There’s a link to listen to it here and I’ll add it to the Links page on the blog as well.

The key message was around the importance of early intervention to help young children with PDA understand and manage their anxiety and other potential mental health issues which can develop alongside PDA and I picked up some helpful tips to do this and yet again it was so empowering and reassuring to listen to experts and other parents talk about and understand the issues we face as a family.

Some key things I’ve taken away are:

  • Anxiety can be confused as a hungry tummy (I’ve always noticed a link with Little Miss M’s anxiety and her saying she’s hungry) so we’ll be working on helping her to better understand the signs of anxiety as opposed to hunger and how other emotions feel in the body.
  • Researching Dr Elizabeth Shea’s work in relation to food refusal and a limited diet to see if any of her suggested strategies work for Little Miss M as she has a very limited diet and refuses to try new foods.
  • So much more as well which I can’t put into words, except to say I have a better overall understanding of the potential mental health issues which can affect Little Miss M due to her PDA and more confidence in our approach with these issues having listened to the advice in the webinar.

Thank you PDA Society and Dr Judy Eaton, once again.

 

Peace with PDA Facebook Group

There are so many supportive PDA Facebook groups but I wanted to give this one a special mention because looking after you and finding ways to manage your own stress are so important when you’re a parent or carer to a child with PDA.

Peace with PDA is a wonderful space where fellow parents and carers of children with PDA / suspected PDA are supported to find peace of mind and reduce their own stress and anxiety through Emotional Freedom Techniques (EFT) which is also known as tapping. I love it and the lovely lady who runs it.

I won’t go into too much detail to explain EFT as Lindsay does that best but it’s such a simple thing to do. You gently tap on different parts of your body while saying what you are having difficulty with and that you love and accept yourself even though you feel this way. Through tapping  and interacting in the group, my stress and difficulties have felt heard and validated and much easier to deal with. I’m calmer which is great for me and I’m much better equipped to support Little Miss M.

Lindsay is mum to a child with PDA so understands the challenges and stresses and shares her own experiences. She has a background in counselling and working with EFT and is such a wonderful source of comfort, support and inspiration.

Check out the group description for more info and if you feel it’s the place for you, I’ll see you there!