Monday, 11 March 2019

Dear PDA child... I see you.

When somebody whose writing I greatly admire told me they had written something for children with Pathological Demand Avoidance, I was touched. That someone is Miriam, who writes over at Faithmummy about her life with two autistic children and a husband also on the autism spectrum. 

I'm pretty sure that many parents of children with PDA would like to know that there are others out there who understand. Of course, other parents living with PDA children will understand, but to hear that the message is getting through to a wider circle will mean a great deal to many. Thanks to everyone who takes the time to listen and to understand.

**********
sasha at home

Dear PDA child, I can see you.

You are not my child but that doesn’t matter. I don’t respect you, admire you or support you any less. You are amazing. I just wanted you to know that someone sees you. 

I see that you are so misunderstood by everyone. They don’t see how overwhelmed you are, they just judge your actions as a result of your loss of control. 

I can see how the demands placed on you cause you to curl up on the inside and the outside. The pressure, the intensity, the bombardment, that continually hits you until you explode but then you get punished for the explosion and nothing gets done about the reason it happened. I see it all. 

I look on and see a child struggling when others label you as stubborn or controlling. I know you are neither. Remember there are people who understand you. 

I see your anxiety even when others don’t. I see it affecting everything about you. What others perceive as naughtiness or challenging behaviour I see as your anxiety manifesting itself. Sometimes I wonder why no-one else can see that. 

I see your school refusal. I will never judge, just understand. You have every reason to refuse you are not just being obnoxious or cheeky. I know it’s not just about the academic demands on you either, it’s the social and emotional stuff too. I know and I care. Would you believe me if I told you you are not alone? 

I see you trying. Trying to fit in, trying to conform, trying to please others. The paradox of wanting to be the same and blend in for fear of being different verses the need to be you or you will explode. School days won’t be here forever. Your PDA will so don’t be afraid to be you. 

I see you struggling in school, at home, and with your peers. I almost wrote ‘friends’ but I know how hard that word seems at times. It’s something that often eludes you sadly. So you immerse yourself in your own world and interests to cope but still the demands come. ‘Eat your dinner’, ‘brush your teeth’, ‘turn your iPad off’, it’s never ending, each one pushing a button that will eventually break. 

I see your fragility. One thing different and that’s it over. One change can be all too much. One more demand, either explicit or unwritten, like expecting silence during a film, is all it takes. It bubbles up inside you like a pressure cooker affecting your appetite, your mood and your behaviour. You look like you are made of durable plastic but really you are precious glass, fragile and easily broken. 

I see your family struggle. The pressures of conformity, normality and being different take their toll. The misunderstanding and judgment because they have learnt how to get the best from you but others view it as lack of discipline or disrespect. My heart breaks that people don’t yet understand PDA enough or accept it as a disability. 

I see your pain of being excluded so often. The party invites you don’t get, the family gatherings that are too much for you, even the holidays you feel like you are ruining at times. Your different ways bring pain and I see that and care. 

Mostly though I wanted to tell you that I see your bravery and I am so proud of you. I know what it takes for you to achieve something others find easy, like following a recipe without changing it, or getting through a day at school, or enjoying an activity like roller skating. Your determination makes me so proud. You face more than others will ever know. Your internal battles are huge. 

You don’t often hear this because praise itself can be a demand to you but you should be aware that you are awesome. People will tell you otherwise but that’s their issue, not yours. To face the struggles you cope with just to get through a day, or settle yourself to sleep, or eat something different is incredible. I accept that, acknowledge that and understand that. You are talented, beautiful and worthy. Your difference is your power. 

Dear PDA child, you may not be mine but I look on you as if you were. You bring me joy, pride and so much happiness. I am rooting for you, cheering you on and thinking about you. 

You have an incredible future just exactly as you are. 

I see you. You are wonderful, 

From a mum who sees your struggles and cares.




To find out more about our experiences, please check out our 'About Us' page. If you are looking for more information on Pathological Demand Avoidance, the posts below may help.

What is PDA (Pathological Demand Avoidance)?

Ten things you need to know about Pathological Demand Avoidance

Does my child have Pathological Demand Avoidance?

The difference between PDA and ODD

Strategies for PDA (Pathological Demand Avoidance)

Pathological Demand Avoidance: Strategies for Schools

Challenging Behaviour and PDA

Is Pathological Demand Avoidance real?

Autism with demand avoidance or Pathological Demand Avoidance?




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11 comments:

  1. Awww this is Beautiful, such compasdionate words expressed just perfectly , thankyou for sharing this
    xxxxxxxxxxxxx♡PDA♡xxxxxxxxxxxxx

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  2. I’m reading this through a river of tears. Thank you. Thank you so so much. I’m going to read this to my son tomorrow. He’s had a couple of challenging days (including being sick and not sleeping), and he has suffered a couple of intense meltdowns. This is amazing. As his mom, I feel seen too. I hope he will. Thank you.

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    1. Oh I hope he feels better and calmer soon. I'm not sure Sasha would appreciate hearing this just yet, but I hope there will be a time as she gets older that she will x

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  3. This is just beautiful 💕 Well done Miriam for writing such a powerful post. I’ll be sharing later XX

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    1. She's amazing, isn't she?! So thoughtful too x

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  4. just amazing! thank you! made me cry xx

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    1. A few people have been moved to tears by this. Amazing writing, but the fact it is heartfelt means that much more x

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  5. just amazing! thank you! made me cry xx

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  6. Thank you so much x I have just read this to my 14 year old son who has ASD, ocd and is tormented by voices. So much of what is written here applys to him and Sam wanted to thank you himself for sharing that others do understand and care xxx

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    1. Aww thank you for commenting, it's lovely to know it's helping those with PDA too as well as the parents! I will pass your comment on to Faithmummy x

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