When Your Child Is Different

29 May

I’m battered. There’s no other way to describe it.

Physically battered because I had my wisdom teeth extracted a few days ago and suspect that Mike Tyson was the surgeon. Post op I’ve developed a dry socket which has left me climbing the walls in pain and shows no signs of abating.

And I’m emotionally battered after an extremely strained period in the Doubtfulmum household.

The icklest boy is now 10 months (oh god, oh god, oh god) and has spent 12 weeks ill, teething and learning to crawl and cruise. He’s now finished his 3rd round of antibiotics and is cutting his 8th tooth (the 6th in 5 weeks). Coupled with his desperate attempts to get on the move we have endured what feels like an eternity of crying, sleep deprivation and frustrated shouting (80% baby and only 20% me, promise).

On top of this, we have been experiencing another turbulent time with the big little man’s behaviour. Initially, I put it all down to sibling jealousy because that is definately a feature in his latest outburst. However, some of his troubles seem to run a little deeper, and now, for the first time in 5 years, I feel like I may have stumbled on the possible answer.

I’ll be honest, I’ve felt in my gut since my boy was a toddler that he was different from his peer group. His tantrums were more explosive, his attention seeking was excessive, he was kicked out of nursery and his first childminder dropped him after 3 months because she couldn’t handle him.

At the time, I spoke to the GP about possible behavioural disorders and was referred to the appropriate NHS assessment facility, who refused to even see him and suggested I instead attend parent classes and see a Health Visitor.

The Health Visitor met my son for 15 minutes for a standard 2 year check up, and declared him a very bright and energetic individual who was let down by his nursery and probably just needed more nurturing and stimulation.

So he was normal, neigh, above average clever, and I was just a shitty parent who needed to take classes in how to be less shitty.

So for the past 3 years, with the aid of two great childminders and a relatively successful start at school, I have put up with/ battled/ dismissed his tantrums and difficult behaviour as nothing more than a bright, but highly strung boy who was determined to have his way.

And I set up this blog to express my doubts and fears as a “trying but failing” parent.

But as time has rumbled on, and he should be maturing, his behaviour has only gotten more extreme.

His tantrums have become increasingly aggressive towards me, his avoidance of the most basic of tasks is at times draining and his need for attention and control of everything is becoming suffocating. He is like Jekyll and Hyde: happy and polite when everything is on his terms, but monstrous the very second we give him the smallest of demands.

I have deployed Supernanny techniques a plenty, naughty steps, reward charts, even her bloody iPad app, but they fail time and time again. And the more rigidly I apply discipline and consequence: the more I seek to establish correct behaviours, the more he fights against it.

This power struggle has at times created an upsetting tension between us and the guilt of occasionally not liking my own son has driven me to some desperate moments.

In addition, he has continued to experience some issues at school. He has struggled to establish any new meaningful friendships since his best friend of two years dropped him. He has tried. He is still trying desperately, but his need to dominate and control play is driving every friend away. I’ve seen it with my own eyes. So now he is once again increasingly playing alone.

And then there is the skin picking. It started as jumper chewing in lessons, but the school didn’t like that and pestered him to stop. So he instead started picking his fingers, his toes and now his ears until they bleed. I have tried in vain to stop it, but every effort only worsens the picking.

It’s breaking my heart.

But a few weeks ago I hit on a lightbulb moment. I watched a programme called “Born Naughty” on Channel 4. The episode featured a child who was considered to be out of control, and until now, her parents had been blamed. However, during the programme she was assessed and diagnosed with PDA.

The following week, a mother and her PDA son featured on “This Morning”. The mother “Maxine” described how her 9 year old son would have massive meltdowns whenever she asked him to do anything and these meltdowns got so bad her own mother had to call the police on two occasions. The police arrived scratching their heads, unable to understand why she couldn’t control her son.

As she recounted her story, she described all of the PDA traits and my mouth hit the floor.

She was describing my 5 year old son. Exactly.

So striking were the similarities, that I contacted the show and asked how I could speak to someone about PDA.

I was forwarded a link to a PDA Group which I immediately joined, I accessed websites, I ordered books and I read.

And I finally felt that I had found my son.

PDA stands for “Pathological Demand Avoidance” and is now considered to be part of the autism spectrum.

“Individuals with PDA share difficulties with others on the autism spectrum in social aspects of interaction, communication and imagination. However, the central difficulty for people with PDA is the way they are driven to avoid demands and expectations. This is because they have an anxiety based need to be in control.

People with PDA seem to have a better social understanding and communication skills than others on the spectrum and are able to use this to their advantage.

People with PDA can be controlling and dominating, especially when they feel anxious. However, they can be enigmatic and charming when they feel secure and in control. Many parents describe their child with PDA as a ‘Jekyll and Hyde’ character. It is important to acknowledge that these children have a hidden disability. Many parents of children with PDA feel that they have been wrongly accused of poor parenting through lack of understanding about the condition. These parents will need a lot of support, as their children can often present severe behavioural challenges.” (Autism.org.uk)

I could list you every trait of a PDA sufferer, but this website summarises them perfectly.

I have at some point seen and unknowingly commented that my son possesses almost every one of these qualities. Even my husband and family members who initially dismissed any suggestion that he may be anything other than just highly strung agreed that he holds a number of PDA qualities.

But in finding this “eureka” moment, I feel I have potentially opened a big can of worms.

Do I get him assessed? Is it the right thing for him? Will anyone even take me seriously?

What if he does have it? How will we cope? What if he doesn’t?

It’s a scary path I’m treading.

I was even nervous about publishing this post. I’m acutely aware that without a diagnosis some people may judge me, may feel that I am seeking to label my child to excuse my inadequate parenting or that I’m exaggerating normal child misbehaviour. It’s an accusation I have already received from more than one adult who doesn’t know me or my son well enough to truly understand.

But I’m not a bad parent. It took us 7 years and 4 cycles of IVF to have our children. I didn’t do that to be neglectful towards them. I’ve always taken my responsibilities in raising well mannered, well behaved, happy children seriously. If anything, too seriously. Even my Health Visitor admitted that my youngest is turning out beautifully and that if I was really a sub-standard parent this wouldn’t be the case.

And if I do go for assessment, I have a battle on my hands.

I have contacted the GP, Health Visitor and his school to request a referral, all of whom have been politely unhelpful. Well, some less polite than others. And as PDA is not widely acknowledged, even if I did get a referral, it’s highly possible that he won’t be diagnosed or offered any support. It’s a scenario I have seen replicated in numerous PDA cases I have researched.

So I’m at a cross roads. Gutted and anxious about my son’s possible future, but also relieved that perhaps there is a reason behind his difficult behaviour. And in understanding this reason, I can stop fighting against him, stop trying to change the way he is, and instead work with him to reduce his anxiety.

I’m no medical expert, so I could be wrong. But I do know my son, and the more I know about PDA, the more I see it in everything he does. So, while we await the potential long assessment process, I’ve started adopting some PDA techniques in the home to see if they help.

He has good days and bad. On the good days we can apply the techniques to get him dressed, teeth brushed and out the door with very little drama. On the bad days everything is too much and a meltdown is guaranteed. When it takes hold, I duck the flying objects and try to keep everyone safe.

It’s a rollercoaster. One we have to ride.

Thanks for listening.

Post Comment Love

3 Responses to “When Your Child Is Different”

  1. Caroline (Becoming a SAHM) May 31, 2015 at 5:58 am #

    Oh wow, I was reading a little about this just a few days ago, here http://www.stephstwogirls.co.uk/2015/05/this-is-our-pda-story-week-13-born.html which may be worth a read and getting in touch? Sounds like you have been through such a hard. Time and so horrible to be accused of bad parenting when you are clearly trying everything you can! So awful that your concerns have been dismissed when both he and you may need help, shows the flaws in the system where people slip through the cracks. Good luck with whatever you decide to do with this knowledge! Xx #pocolo

  2. Let kids be kids June 1, 2015 at 12:27 pm #

    It must be very frustrating not having anyone listen to you, but feel a little relieving finally finding something that may be causing the problems. I hope you manage to get the answers and help . xx #PoCoLo

  3. Laura February 21, 2016 at 9:03 am #

    Thank you for sharing your story. I understand it’s a brave thing to do and I want to let you know that reading your story has brought much comfort to me as our stories and search for answers are so similar. We are awaiting an assessment for ASD but the more I learn about PDA, the more relevant it seems to be for our son and the hourly and daily challenges we face. The problem seems to be that PDA is not widely known about or diagnosed in Australia which is disappointing after such a long and difficult search for answers. Apart from the challenges of accurate diagnosis our biggest challenge at the moment relates to education as school is such as stressful place for our boy. And yet the nature of PDA makes home schooling virtually impossible for us at the moment.

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