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My Sunday Photo 20.5.18

20 May

A Royal Wedding Celebration!

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It’s D-Day: The diagnosis

8 Jan

So today is the day. Here we are.

The assessment we waited so long for, is finally over and we have a diagnosis.

My son has autism.

More specifically, the clinicians believe he has Aspergers.

Despite my fears that DS1 would mask his issues and that once again I would be accused of poor parenting, for once, these people could see through his superficial capabilities to his underlying difficulties, and for once they agreed that I was right to have concerns.

So how do I feel?

If I’m honest, I don’t know.

I do know I feel vindicated. For 6 years I have believed that there was something wrong. For 6 years I have been asking for help. But for 6 years I have been rejected, dismissed and accused of being the cause of my son’s problems. For so long I have heard excuses and been made to feel insane. There are times I have doubted myself and questioned my ability as a parent. But it is this very ability that gave me the instinct to fight to be heard. Like any parent, I know my child better than anyone else, and today the professionals finally confirmed that.

I expected to feel angry. Furious at those people who have failed me and my son. The NHS professionals who refused to refer him for assessment, the education professionals who refused to acknowledge my concerns and instead suspected me of child abuse. The numerous people who blamed all his difficulties on my decision to go to back to work and the ignorant people who insisted he couldn’t be autistic because “he was too smart”.

But in truth I don’t. I don’t have the energy for anger. It’s a wasted emotion right now.

I’m exhausted and numb.

I’m also confused. Because the diagnosis of Aspergers isn’t quite what I had expected. And right now, I don’t know what that means. I need time. Time to process.

Since finding PDA, I felt I had found my son. It was my lightbulb moment. The PDA behaviours fitted my son, and the PDA strategies worked in managing his issues. So I’m nervous that in classifying him Aspergers, the professionals will request support and strategies that won’t really hit the spot.

But right now, I see this initial diagnosis as a key step forward. There is no doubt, my son has an autism spectrum disorder. There is recognition that he suffers from sensory processing disorder and struggles with many social and communication skills that we take for granted. There is agreement that his difficulties cause him intense stress and anxiety and that his meltdowns at home are the result of him holding himself together at school. So this is a foundation upon which to build.

And when I get the full report and have had time to digest it, the fight will begin again.

In the meantime, thanks to those who have listened and supported this far. It has meant the world.

When Christmas isn’t all comfort and joy

31 Dec

Christmas is almost over, and New Year is so close you can smell it. And I for one will be a little pleased to see the back of it.

It pains me to say that. Genuinely, I love Christmas. I love everything about it: the hype, the decorations, Santa, spending time with my family, giving presents and the annual mammoth roast that tastes so good I just have to eat it until I am sick.

But it is those very things, all those exciting, special things, that seem to trigger DS1’s most difficult moments.
For several years I have found my oldest son’s behaviour extremely challenging at Christmas.

Christmas Eve, the build up to Santa’s arrival has repeatedly led to explosive meltdowns. In fact, the more I would remind him to behave himself if he wanted Santa to visit, the worse his behaviour would become. Inevitably, every letter to Santa before bedtime would consist of an apology for his poor behaviour that day and a promise that he would behave better tomorrow.

Christmas Day would be manic. He would dominate the present opening. Tearing the wrapping paper from his presents at alarming speed and then attempting to open other people’s presents before they could. He would often appear ungrateful for the wealth of toys he had received and be totally unsure what to do next.

He would frequently appear to attention seek and cooking Christmas dinner was interrupted repeatedly by his attempts to sabotage.

In general, his behaviour appeared hyperactive, obnoxious and incredibly irritating and I would feel frustrated, embarrassed and somewhat upset that my high hopes for a happy, fun, and dare I say – relaxing day, were ruined.

But I never understood why. Until I became aware of ASD and PDA.

It was only then that I could understand that perhaps, just perhaps, that hype, those expectations, the extra people, the loss of routine, might be incredibly stressful for him and that perhaps his manic and challenging behaviour was actually a result of high anxiety.

So this year I tried to make things a little easier for him. To lower demands, give him greater control and help him manage his expectations.

On 1st December, I assembled the tree while he was at school and let him decorate it exactly as he wished.

That night we also started to read a bedtime story called “How Many Sleeps Until Christmas?” to manage the countdown.

5 days before Christmas I put up a countdown board and each morning he would write up how many sleeps were remaining until Christmas.

I also began to play a personalised Christmas story telling CD in the car which he seemed to really enjoy.

On Christmas Eve, I anticipated that the expectation for him to “behave” was just too great a demand and made meltdowns more likely, so I changed tack. I kept demands on the day low. He was left to do as he pleased in the morning. No requirement to get dressed, no chores, just playing what he wanted, when he wanted. While his baby brother took a nap, I played with him and we drew Christmas pictures together. At that point, he volunteered to write his letter to Santa.

When he asked what to write, I suggested that what Santa would most appreciate is that he tried his best this year and not that he always behaved. This seemed to calm him, and the result was beautiful.

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In the afternoon his tension rose and the odd outburst occurred, but we managed to prevent any extreme meltdowns. By late afternoon we were using the NORAD Santa Tracker to trace Santa’s movements and by bedtime, he was not far from the UK, so this was the perfect persuasion to get him into bed and asleep pronto!

On Christmas morning, DS1 was inevitably up ridiculously early. From 4.30am he was in and out of his room like a yo-yo unable to sleep.

By 7am, he was downstairs examining his haul.

To keep his anxiety low, we explained how the day would unfold, giving him control where possible to decide what would happen and when. We agreed specific play times with daddy while his baby brother was napping, and again while Grandad and I were cooking the Christmas dinner to manage his expectations and try to minimise his attention seeking. Finally, I told him it was ok to take regular visits to his room to chill alone if things got too much.

When the Grandparents arrived for another round of present opening, we put DS1 in control. He was the director of the show, the conductor of his orchestra, dictating who could open their present next.

The day went largely well, with only the odd hiccup. The little man held it together well, taking himself to his room occasionally to play in peace and even agreeing to eat the turkey roast without chips on the side.

All things considered, it was a huge improvement on previous years, but my god, we have paid for it since.

By Boxing day, his behaviour was becoming difficult. He was dominating play with his baby brother, frequently snatching toys from his grasp, shouting at him and interrupting his attempts to play with his own toys alone. His general behaviour was becoming more manic and defiant, and he was taking far more distracting to keep him from melting down. Bedtime could not come soon enough and my nerves were beginning to fray.

The following day, we separated the boys as the play was becoming stressful, so hubby took our youngest out while I took DS1 to lunch and then the cinema. He was fidgety and manic, but manageable, and we had a good time.

On 28th December, I agreed to another outing of his choice to keep him away from his little brother for a few hours. This time a pantomime visit. He fidgeted, picked his fingers, and repeatedly asked if it had finished, before declaring it awesome. We had a good experience and he seemed to be happy and coping well. But once home, his behaviour again became extreme.

Since that time we have bounced from one exhausting meltdown to another every single day.

We have set up a sensory light tube in his bedroom to create a calming space for him to escape to, we have used every strategy possible to reduce his meltdowns, but ultimately, this time of year has taken it’s toll on him, and us, and I am hoping that a return to the school routine will help stabilise his mood.
So goodbye Christmas 2015, I think we enjoyed you for a while, but New Year and normality – whatever that is – awaits.

When things go right – A Sunny Sunday

21 Sep

Today I just had to write. Because today was so rare.

It was just so right. And I’m buzzing.

The last few weeks have been shitty. So so shitty at home.

Since my biggest boy has gone back to school, his behaviour has again deteriorated dramatically at home. His tolerance for the smallest of requests has plummeted and we have once more become his literal and metaphorical punch bag.

The evenings and weekends have been tough. I’ve screamed myself hoarse out of sheer frustration at times as our previous strategies have failed and meltdowns have again become an everyday event.

I know I’ve messed up now and then and been a frightful grump, but it’s hard to think clearly when chaos crowds your judgement. The screaming, the throwing, the punching, the growling… it drives me to distraction.

But today was different.

Today was such fun.

The weather was on our side and we took full advantage.

A trip to Hyde Park. One of my favourite hang outs.

Sure, coaxing the big little man to get ready was a challenge. He couldn’t help but avoid. But I was ready with ideas, and he can rarely resist a race. So off we ran.

Once we arrived at the park, the under 3’s play area was our first destination. A treat for the littlest boy, with big bro as guardian and playmate.

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Next, the pirate ship. Sun and sand.

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Then over to the other side – ice creams and ice lollies for the journey.

A race along the Serpentine…..

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A wander through the trees……

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A roll on the grass

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and an adventure in the playground.

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Smiles and laughter from my eldest and squeals of joy from the youngest.

Calm contentment filled my soul.

I felt alive, I felt free, I felt like a family.

Of course the meltdowns resurfaced at bedtime. It was inevitable. But they pale into insignificance when compared to those 4 precious hours where we all got it right.

And for that, I feel good.

Our PDA Story – A Small Step in the Right Direction

2 Sep

Today I am filled with emotions. A whole smorgasbord of emotions.

But I guess if I had to pick two – I’d choose excitement and NERVES. Lots of NERVES.

For today I received some news.

Today I received confirmation from an Autism Centre that my eldest boy has been ACCEPTED for assessment.

How the hell did this come about?

Let’s rewind.

Since I first had my lightbulb moment many months ago, I have been silently but steadfastly working towards a diagnosis for my son.

It started with a visit to the GP, who sent me to the Health Visitor, who sent me to the school nurse, who tried to send me on parenting classes. I spoke to the SENCO at school, who wouldn’t support a referral because my son is apparently totally fine at school (I want to swear here but am refraining), I spoke to a local council helpline, I spoke to a local Autism charity, who sent me back to the school, who sent me back to the GP.

Are you following?

Feeling abandoned by the authorities, I joined an online PDA Support Group and ordered several recommended books.

Then I read a fantastic post by a wonderful blogger whose daughter had been diagnosed with PDA. I contacted him via Twitter and asked for his tips on achieving a diagnosis. He not only provided me with a recommendation of a specialist centre, he also listened to my story, and told me about his own long journey.

Armed with new information and the unfaltering support of my family, I contacted the centre and began a process of private self referral.

But a privately funded referral did not guarantee my son would be accepted. I had to provide sufficient evidence to satisfy their clinical team that he was appropriate for assessment.

Since I have been wholly dismissed by the NHS since my son was 2, I had no previous clinical opinions or notes to support my case, so it was just little old me, articulating in a detailed and evidenced manner, why I believed he was suitable.

And after 4 weeks of waiting, the clinicians agree, and very soon I will receive an actual date for a full diagnostic assessment of my boy.

Armed with this information, I approached the school, who have finally agreed to meet me and have perhaps, just perhaps accepted that I might be onto something and I certainly am not going to go away.

After 6 years of feeling incompetent, crazy, alone and despairing, I now feel tantalisingly close to an answer.

And in the meantime, I have found some new wonderful allies. Fellow PDA parents who just “get me” and my boy. Having suffered the same frustration for so long, they are masters of this condition, experts on their children, fountains of knowledge.

So today, for the first time, we take a step. A small step in the right direction.

“Girls With Autism” – a response

20 Jul

Last week, ITV screened a programme called “Girls with Autism”.

It centred around a Special School named Limpsfield Grange for girls aged 11-16 with Autism and featured a girl named Beth who has a PDA diagnosis.

I was excited to watch it, and publicised it to my friends as I was keen to encourage greater awareness of this lesser known autism spectrum disorder and perhaps provide a glimpse into our life raising a boy with suspected PDA.

But having watched the programme, I came away concerned that the message conveyed about PDA was wrong and quite contrary to the guidance provided by the PDA Society.

My biggest issue centred on the suggestion made by the teachers that what the student needed was “tough love” as she was no different to anybody else. They also stated that they needed to “flood her with praise” so she would learn that the more she participates, the more praise she would receive.

The Head teacher went on to state that “With Pathological Demand Avoidance we have to put a very tight, rigid structure around that student and she will not like it…. and it’s a bit like reigning a horse in and training a horse”.

My heart sank.

I was filled with disappointment.

Rather than highlight the recommended professional guidance for parenting and teaching a child with PDA, the school seemed to be endorsing exactly the type of behaviour modification techniques that would send a PDA child into meltdown. And the description of PDA children as horses that needed training and no different to anybody else just made me angry.

My child is NO horse and he certainly doesn’t need reigning in and training – and it is precisely the fact that he isn’t like everybody else that means traditional parenting techniques and “tough love” don’t work.

Believe me, I and many other parents with diagnosed or suspected PDA children will have already exhausted the tough love approach, and for me, having consistently applied firm boundaries and consequences for years with disastrous results, the thought that less informed people might watch this programme and kindly suggest to me that I need to be stricter and more rigid in my parenting makes my toes curl.

The concept of using lots of praise can also be troublesome for individuals with PDA, as it can raise anxiety levels. Praise is better received indirectly – for example, if they overhear you telling somebody else how well they have done. This is certainly the case for my son, who is noticeably uncomfortable if he receives too much direct praise and will “disengage” immediately from the conversation.

The PDA Society have since issued a statement confirming that some of the comments made in the programme appear to be at odds with the recommended guidelines for children with PDA.

However, since the documentary was aired, I have been fortunate enough to read further explanation from both Beth and her mother regarding the techniques the school has successfully adopted, and it is clear that these few unfortunate statements are not representative of the excellent work that the school have done to support and educate Beth. They have in fact put in place an individual and tailored plan to deal with the underlying anxieties and demonstrate to Beth that she can tolerate a level of demand. This approach fills me with much hope, that with the right diagnosis and support, my son may have a brighter future ahead.

Therefore, on reflection, I feel that the issues lie with the editing/lack of context, rather than the approach of the school itself, and I am grateful to Beth and her family for generously appearing and raising the profile of PDA.

If you watched the programme and would like to understand more about Pathological Demand Avoidance and the recommended parenting and education strategies, please consult the PDA Society website here.

An ordinary day with an extraordinary boy

29 Jun

Today started like any other Saturday.

Full of promise… A day of fun planned.

I drew a schedule. Hour by hour, what was to come…. Just as I was advised to do by the Special Needs teacher at the school… To help the big little man visualise the day ahead.

I even had a haircut booked for the first time in 8 months!

The morning went quite smoothly.

For me: a precious few hours of peace in the hairdressers.

For the boy: taekwondo class.

After lunch, a trip to the barbers for the two boys. A first haircut for the littlest and a tidy up for big brother. Both looking so smart. Mummy so proud.

Then some quality mother and son time at the cinema for me and my eldest.

The Minion Movie. Followed by a visit to the Build a Bear Factory to make a minion teddy. He was spoilt. But well behaved, so I didn’t mind rewarding him. My beautiful boy.

Then we got home. And he turned.

Upsetting the baby, trying to hurt him. Teasing him with food. Being rude to daddy, demanding attention. Refusing dinner, making unreasonable demands.

He was sent to the calm down corner for 5 minutes, his behaviour continued. His minion toy was confiscated. His bad behaviour escalated. He was warned that if he didn’t stop his misbehaviour he would be sent to bed. He kicked off.

Daddy took him to bed.

And from then on we were subjected to an hour long tirade. He screamed, shouted, begged to speak to daddy, threw the contents of his bedroom down the stairs. He attempted to come downstairs numerous times. He threw a shoe at my head. He threatened to soil his pants, complained of tummy ache, bit me, and screamed at daddy to come upstairs so he could talk to him. When I asked why, he could give no reason.

In the end I sent daddy out in the car to stop my son screaming for him. Alone, I tried to get him to go to bed whilst protecting my baby from his abuse.

After endless attempts, and repeated aggression towards me I threatened to call the police if he came out of his room once more.

I dialled 999 on the phone and showed it to him.

He gave in.

This is my life. This happens several times a week.

I have sought help and an assessment from multiple sources… GP, Health Visitor, school nurse, the Special Needs teacher, charities. All nod with feigned interest and calmly suggest I attend parenting class and give my son more boundaries.

My son has boundaries. He is fully aware of what they are.

I am consistent.

I apply rules, I write them up where he can see.

I give reward and consequence.

I give him attention, I praise his good points, I do not accept bad behaviour.

But the more consistently we apply discipline, the worse his behaviour becomes. He will stop at nothing to regain control.

My son is not just a naughty boy. I am not just a bad parent.

I am trying so hard to find a way forward but I am tired. I feel alone.

I love my son with everything I have, but sometimes I question how much more I can take.

I am a smart lady. I understand the concept of teaching right from wrong but it’s not enough.

I don’t know where this will end.

With every meltdown I become just a tiny bit broken. But with each new day I have to find new strength. I have to fight for him. For us.

My extraordinary, unique, complex, beautiful boy.

Dinky and Me

I am mum to Dinky who is awesome- she also has been diagnosed with Autistic Spectrum Disorder-PDA, ADHD and Sensory integration difficulties

@adadcalledspen

Not a journalist or a writer, just a dad to two amazing children. Oh, and I love cheese.

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