Tuesday, 25 October 2016

The week before a first #ASD assessment meeting in Hertfordshire #PDA

My youngest is 8 years old and from when he was tiny we knew he was a bit different. He is loving and chatty but had a number of quirks which to us just made him a truly unique person.

Assessment for #asd #pda Hertfordshire


It's difficult when you have a large family - not many people I meet have 7 children so it's hard to know if your younger children are just the product of being the smallest in a big brood. What I think I am trying to say here is that, at first, I thought he we (parents and siblings) had maybe spoiled him.

But as time passed and he grew we came to realise that maybe some of his ways were not just because he was adored and pampered.

madmumof7 with youngest child

In his first week of primary school the TA suggested we buy ear defenders as Grumpy was not coping with classroom noise. And when he realised the time had come to move up a class and swap teachers he panicked and was apparently really distressed.

The staff at our wonderful village school acted quickly and by the time I came to pick him up at hometime they had made a transition plan for my son. As they had done for a child with diagnosed autism in another class.

Then I got the chance to get to know blogger Steph Curtis from Steph's Two Girls and started reading her blog about her daughters, one of whom has an ASD condition called PDA- Pathological Demand Avoidance.

Lightbulbs started pinging on as I followed her links to resources about PDA and I'm sad to say I cried as I realised my little boy seemed to have many of the characteristics of this Autism Spectrum Disorder.

Steph has a brilliant post you can read here which explains more about the disorder. Briefly summarised, people with PDA  avoid even everyday demands made by other people because it causes high levels of anxiety.

Now this might look like spoiled/naughty child syndrome to others but I'll try to explain it by asking what are YOU afraid of? For me it's irrationally, spiders. So if I ask Grumpy to put his pyjamas on, it can be the equivalent of asking me to hold a spider in my hand.

Sometimes he can do things he's asked with no fuss. It usually depends on what kind of day he has had, how many demands have already been made and how they have been voiced. Often he copes well at school then we have the evening from hell with a two/three hour bedtime fiasco which often leaves us exhausted, emotional and sadly sometimes rowing about how best to handle him.

There are other "symptoms" which people are more familiar with when it comes to autism- his diet is limited and mostly consists of beige food. He would eat only choc-chip brioche if I let him. He's highly unlikely to eat food at other people's houses so I always carry brioche.

He is extremely sensitive to sound and smells. Sound is an odd one - sometimes he needs ear defenders for background street noise but he happily handled aircraft takeoff. We are learning it depends on how much tolerance he has left.

He can smell dry cat food a mile off. He will gag at body odour of any kind. He doesn't like cooking smells.

madmumof7 with youngest child #asd #PDA

Clothing can be difficult as we deal with obsessions about particular items and how he wears them. Socks often have holes ripped so his toes poke out - not sure why but he says it's comfortable. T-shirts and pants are often back to front and he has been known to wear multiple layers of underwear and clothing so his favourites are next to his skin. Apparently he doesn't mind his own body odour as changing his boxer shorts can be a battle!

I could go on and on.

He is aware that he is different to others-well actually he thinks they are different to him.

I often take him into the disabled toilet when we are out as hand driers and background noise and smells in the main toilet often sets off a meltdown of distress. (He doesn't get angry or violent, just extremely upset). He once asked why he was allowed to use the disabled toilet and I explained about invisible illnesses. He smiled and said he didn't have an invisible illness, just visible weirdness. I love that. He's aware but not bothered by it.

Anticipating problems is still new to us. We often fail to spot the signs of an imminent crash and burn.

Last week his teacher went on a course. He told me in the evening that she wouldn't be there the next day. He was calm and chatty so I didn't think anything of it. The next morning he told me he had a sore throat, a headache and a broken leg. He often has a broken leg. People with PDA will try anything to get out of a situation, often spending more energy and time on avoidance techniques than if they'd just done the thing they'd been asked to do.

He limped up the road to school crying. I tried to distract him with chat about an upcoming day out. When we got to school he pulled his hat over his eyes and curled up on a bench. Uh-Oh! The hat is a tool he often uses - it's massive and he can cover his eyes and ears I presume to limit sensory input.

Child in #PDA #ASD meltdown

My closest friends who are thankfully sympathetic to his quirks mused about what had set him off. It was actually my friend Claire who linked the teacher being away to his panic. I quickly went to find the supply teacher and asked if she would mind introducing herself to Grumpy. She was very obliging and thankfully crisis was averted and he pulled the hat up and went into school.

This weekend he was invited to a birthday trip to the cinema by one of his closest friends. This friend lives half the time with Dad and half the time with Mum who, it turns out, Grumpy did not recognise. He pushed himself behind the postbox. I thought he was playing a game. When it was time to get into the taxi I called him and he wouldn't come out. I realised tears were streaming down his face. It was all too unknown, unexpected, unpredictable and he didn't know all the people there.

He begged to go home saying he felt sick and his head hurt. I didn't want to ruin the party for the others so went to tell the host we had to leave.

Thankfully she is a teacher and has obviously had training and experience with autistic children because she handled the situation brilliantly, refused to give up on him and, long story short, he agreed to go with her and really enjoyed the trip out.

This is a long explanation outlining only a few aspects our our life with Grumpy but I finally get to the point. As he started to grow and we realised he was coping less and less with the increasing demands of life and school we realised we had to seek help.

Next week, after the school and his GP submitted reports, we have an initial assessment at a local centre. It's taken 6 months to get to this point. This is just the starting point. We hope to have some form of diagnosis before he starts secondary school in three years time. We have experience of just leaving be, thinking a diagnosis was just words on paper but we sadly have first hand experience that it's handy to have those words in case the cards come tumbling down.

Grumpy doesn't need speech therapy, he's bright and in the right mood, very communicative. But I want to know he has a safety net, that everyone, especially everyone involved in raising and educating him, knows he needs support and most of all, understanding.

I didn't find much information when I looked up the process for children in Hertfordshire so thought I would blog about our journey so that other people in our situation can see what we went through.

I also urge you to read Steph's blog which is has been a vital resource for us. She has also been amazing in putting up with random messages from me as I try to work out what is PDA behaviour and how to handle situations. All while coping with her own situation. Thanks so much for everything (so far!) Steph.

It may turn out that he doesn't have PDA or any Autism Spectrum Disorder. He might simply be quirky, unique, "visibly weird." But at least by asking for help we will hopefully know for certain, and whatever the result learn better strategies to help him live a happy and fulfilling life which is our main aim in all of this.

I will post details about the initial assessment after the appointment next week.

Here's the update - click the link to find out what happened.








4 comments:

  1. Oh I hope you get some answers so at least you know! It sounds hard when you don't know what can set off him being upset. That first step asking for help is the hardest.

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    1. Thanks - it can vary from day to day but hoping we will learn some strategies.

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  2. What a wonderful, detailed, honest post. And so good to see how Steph's writing has helped another mum get a bit of understanding on this complex behavioural issue. I know this isn't the same, but did you know that highly introverted people have v strong senses and as a result find noise tiring? My husband and eldest daughter suffer from that and she finds the school canteen a nightmare. Susan Cain has written about this - her adult book is called Quiet and she wrote a follow up for kids/teens called QUiet Power which i blogged a bit about. Interesting that there's a connection there betw introverts and those with autism. I so hope you get a diagnosis and support that you can live/work with soon. Sx

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