Archie's PDA Plight

A Mothers Tale

I always knew my son was “different” but I couldn’t quite put my finger on it.  People always said “he’s just being a boy” True…. But why does his behaviour never stop, surely, he must get tired?  “He’s just got a lot of energy” True…… But why does he get angry/frustrated when I try to slow him down?

I sit in yet another children’s group watching my child run, jump wiggle and squirm while the majority of the other children boys included, are sitting down to listen and enjoy story time.  Nope, not my boy!

Professionals keep giving me “strategies” try this, try that…. None of it works. I’m exhausted, why isn’t he! It must be me!  I’m a rubbish parent, I can’t control him.  I’ll go on a parenting course! 

Ok…. I’ve done what has been asked of me, I’ve been on the courses, I’ve kept a diary, I’ve filmed the behaviour, for goodness sake someone listen to me.

3 years of pain, 3 years of self-doubt, 3 years of countless forms and appointments, 3 years of so called professionals and 3 diagnoses later, I was finally given answers.  Autism Spectrum Disorder, Sensory Processing disorder and ADHD was now part of my vocabulary! Hooray, I’m not crazy, I’m not a bad mother, I’m not inept, its not my fault!

I read, I joined groups, I went on courses and yet I still feel like a something is missing.

What’s wrong, why is it that my handsome, charming, intelligent even social boy is struggling so much. Why does he just not fit the diagnosis? Now, I know I can’t fix him! Nor do I want to! He is perfect the way he is. But my heart aches when I watch him try so hard to deal with everyday life and requests.

My son’s diagnosis has been a blessing but it has also been a curse.  I now fight the professionals I once embraced. I try to educate the educators and I am now on a new journey of discovery and a change in my focus! Autism, ADHD & SPD will always be a part of the daily struggles but I now have a new guy in town. PDA! Pathological Demand Avoidance.  Part of the Autism spectrum they say, but we can’t diagnosis it as a separate condition. WHAT! Here we go again. “He’s just naughty” “He is just going through a stage” “He just needs to do as he’s told” WHAT! The clue is in the name.

“Pathological” of a person, unable to control part of their behaviour. 

Looking for help I came across the PDA society…. What a relief. They’re talking about my son! He fits! Another 2 years of fighting and feeling abandoned by the very people who should be helping I insisted that my son be evaluated again.  Yes, they say he “Fits the profile of PDA” but that’s as far as we can go as his paediatricians.  We are shackled by the Health authority and their victorian guidelines.  Screw that! He needs interventions, he needs different strategies, if he were unable to walk you’d supply him with a wheel chair, now what do I do?

So, for the first time in my journey I am unsupported by the people who profess to be care givers.  I’ve kept my end of the bargain, I have secured the Education, Health & Care Plan.  I’ve fought to get you more money to help you while you educate him but now you abandon us!

And here I sit, asking for help!  I contacted the PDA society and have spent the last year jumping through hoops to get them to agree to asses my son.  This will include getting professional from different areas to put a profile with strategies that can be used to help my amazing son through his education and life.  But like everything, it’s a postcode lottery.  Our GP will not fund, our health authority will not fund nor will the education authority.  So, unless I can find £3,500 I can’t get the help my son truly needs.

That’s where you guys come in…… I don’t expect not to contribute but this is a big chunk of money that I now have to find.  I’ve secured the appointment I just now need the cash!

April is Autism Awareness month so I will be fund raising my backside off.  I don’t expect something for nothing.  I will be selling cakes, badges, pens and different gifts to add to my total but if you would like to help me I would be so grateful!

A determined Mother!

Xxx

Donations ()

  • Ash Patel 
    • £20 
    • 25 mos
  • Klaudia Miller 
    • £20 
    • 25 mos
  • Marisa Bartos 
    • £20 
    • 25 mos
  • Jo King 
    • £10 
    • 25 mos
  • Linda O'Rourke 
    • £900 
    • 25 mos
See all

Organizer

Linsey Myford 
Organizer
Uxbridge, Greater London, United Kingdom
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