Wednesday, 25 April 2018

Our PDA Story {Week 36}

Week 36 now in the series 'Our PDA Story', where other families have been sharing their experiences of life with Pathological Demand Avoidance. 


This week's story covers the real struggles in education for a young boy diagnosed with PDA, and the emotional impact on his mum. It sounds like there is a positive ending, but at what cost to everyone's mental health? 


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 Theo was born in 2011 and he was just beautiful and perfect in every way. He was growing well and meeting all the usual targets set by the health professionals. We went to Sure Start groups and interacted with other families. At the age of 2 we found a pre-school we really liked so put him in for the 15 hours, and it went OK. 

We were expecting our second baby in July, so this gave Theo social time away from mummy and the chance to make friends. As time went on Theo's behaviour started to change. He wouldn't play with other children, he would get cross and not be able to sit on the carpet very well. He was also not wanting to use a potty and when dirty didn't want to be changed or to say he was dirty. So we had a meeting with preschool staff and we decided to put him on a TAC (Team Around the Child meetings) to support him. I contacted the health visitor and she said to leave potty training for now, with a new baby coming, and to keep trying a bit later on. 

Time went by and problems kept coming up in preschool. We would have meetings and kept a communication book between us. I went to the doctors and asked for advice and they passed us over to the paediatrician. TAC continued for a while, the school nurse got involved and the health visitor supported us too. Then we saw the paediatrician, not much came from it all and so we carried on. 

Theo is now 3, soon to be 4 and about to start school. Toileting is still a problem; he is not dry and soiling is still happening. We have been to see the doctor and they don't have the answers so it's another referral to the paediatrician. Theo goes for his trial days in school and they go ok but he has toilet accidents. I have a feeling something isn't right whether it be ADHD or something similar, but no one is listening and I'm trying everything thing I can to get help. Theo is becoming hard work and I don't have the answers, preschool are no help and the health visitor is not much help either. The summer holidays come and go, we have huge ups and downs with Theo and behaviours which we thought was tantrums and just being naughty, just not wanting to do as he was told and not wanting to use the toilet. 

So in September 2015 he started at the Primary school and things were ok but not great. I was working in a children's home so was here there and at home, and I start to get pulled in to the classroom after school to talk about Theo and how he is behaving in the classroom. As time goes on it got worse and so I gave up work as I couldn't cope with all the stress that was going on. It all had a huge impact on life for all of us. 

I was called most days from school to say that Theo had hurt someone or he had soiled and they won't clean him up. I needed to collect him which meant he missed the rest of the school day as I had to take him home to clean him. I contacted the school nurse about it all and together we tried it all, from getting cross and shouting to ignoring the behaviour to showing the mess he is in, the lot. Even a star reward chart was just not working. 

Everything that was going on in school was being recorded. The headteacher at the time would take Theo out of the classroom and put him in her office to get him to do work like he was naughty because he would not behave in the classroom. He was given some one to one time but it was not enough. 

There was one morning Theo had kicked off big time and hurt his sister 3 times before we had even left the house, so he was given time on the step to calm before getting in the car. Once in the car I was putting his seatbelt on and he slapped me so hard round the face it stung. I put my fingers on the bottom of his cheek trying to stay calm and said 'you don't hit mummy'. I dropped my girl at the childminder at 8am and dropped Theo at the preschool breakfast club at 8.20am. I then went to school to tell them about what had happened so they had an idea what sort of day they might have with him. 

I was at home talking to my mum on Skype (as she was living in Australia at the time) and at 11.45 I got a phone call from social services to say a social worker was on the way to school to see Theo. As he had a red mark on his cheek when he arrived in the classroom that morning, they asked if I could meet them at school or the hospital. My mum heard it all and I went to school in sheer panic, totally upset. I was beside myself; I got to school and Theo was in the office. The social worker turned up and there was no mark but they continued with taking him to see a paediatrician at Lincoln hospital anyway. 

I couldn't stop crying. Theo was so confused about what was going on. I just told her everything. At the end of the appointment we get back in the car agreeing nothing was of concern as Theo was already under paediatrician because I had requested it. The social worker told Theo that he could go home with mummy today! 

After this they started sending reports to the paediatrician about the behaviour Theo was displaying. We had meetings with all the professionals we could - educational psychologist, school nurse, ESCO and EHCP case worker, a behavioural specialist and now the social worker. The paediatrician gave us an appointment and she decided with the amount of evidence she had that she would give a diagnosis for Autism spectrum disorder with PDA. We walked away relieved we now had answers to why things were like they were. 

The meetings continued, the social worker was happy no more needed to be done, but the school nurse thinks Theo needs to be a "looked after child" and I should know better, as I'm qualified as a nursery nurse/ residential support worker for children who have been abused. I was so mad - how dare someone who sees Theo a few times and had no idea how to help say that? 

We set up a meeting with a special school to see the head teacher. She is amazing; she showed us round and talked us through everything and said how she could help us and Theo. Once we had seen the school we continued with the EHCP and reduced Theo's time at school to 2 mornings a week. We had been told other parents were complaining about Theo's behaviour towards their children. 

At this point my health went downhill and I was put on anti depressants to help my emotions. I hit rock bottom and some days I just sat on the sofa and cried or slept. I was on edge all the time, waiting for the next phone call to come about what Theo had done now. I felt dead and on auto pilot. I would be in contact with the special school regularly and they even offered to have Theo a few mornings a week to help, but the council refused the offer in case Theo didn't get a place there. In May 2016 Theo did get his place and it was the best thing we did for him. 

Theo is still under the paediatrician now, at the age of 6/7, to help with toileting. Things are ok but they are still hard. Some days I could just hide because of the bad day we are having. There are so many people who judge Theo's behaviour as being naughty because they don't know what is going on behind the scenes. Even family don't get what it's like to live with a child who has PDA - we are now as a family having to say NO we are not going to do that because the aftermath can be horrendous, and they are not having to deal with that. 

As a parent I believe I'm still grieving for Theo's diagnosis. I find it hard some days and I can become so angry with people and the attitude, so I just shout at them! I feel I have to shout the loudest to protect my son as no one else will. If Theo was in a wheelchair people wouldn't say anything but because it's not visible people judge. I hate PDA and the difficulties Theo faces everyday but we do the best we can and I hope my story can help others and give them light at the end of the tunnel. 

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Thanks for taking the time to read. Comments are much appreciated and sharing on social media could really help get these posts to people who have still not heard about PDA. 

For more reading about what Pathological Demand Avoidance is, please see 'Challenging Behaviour and PDA', and for an idea of how to help please read Strategies For PDA

There's a chance PDA can be misdiagnosed as ODD (Oppositional Defiance Disorder) but there is a distinct difference. More information can be found here: the difference between PDA and ODD

A variety of experiences of living with PDA can be read using the link This is our PDA story

If you feel up to sharing your own experiences with my readers to help spread understanding (this can be anonymously), please email stephstwogirls@gmail.com. 

The PDA Society webpage has a huge range of information about Pathological Demand Avoidance, and there are also links to info on the PDA Resource website.


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