Our PDA Story {Week 38}

Over a period of about four years, I've been publishing posts in my blog series 'Our PDA Story'. The idea behind it was to share real life experiences of other people and families living with Pathological Demand Avoidance.

I'm grateful to those who have chosen to share their stories via my blog; it can be a brave thing to do and I know that not everyone is able to, for various reasons. However I also know, from messages received, that the posts in this series have given other families renewed energy and hope in times of need. Sometimes just knowing that you are not alone is all it takes to gain a little more confidence to have faith in your own parenting and to have the strength to stand up and fight for your own child.

The guest blogger this week also has a girl with PDA like us; some of the story is very familiar to us but as with other guest posters, her child is not exactly the same as ours. This writer does have her own blog which she started fairly recently; you can find it over at PDA Bubble. Her Facebook page is at www.facebook.com/pdabubble.

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With the experience of hindsight I realise that L was a difficult baby. She is my first and only so I had nothing to compare her to. Everything seemed to happen in a blur of tiredness. Six weeks premature, hospitals, reflux, unable to settle at night, refusing feeds.. Babies are hard work I kept hearing so I kept my head down and ploughed on. I had planned to return to work when she was 10 months and luckily my work had a nursery on site which seemed ideal.

The first couple of weeks went really well as we got used to the new routine and I was lulled into a false sense of security. Her sleeping was still horrendous, she didn't sleep through for the first time until she was 23 months but I was functioning as a working parent. Gradually the reports at pick up went from 'fine' to 'she was a bit upset today'. She would get very upset if another child had cried or if someone else tried to play too close to her. Eventually it was suggested to move her up to the next age room early so there wouldn't be so many crying babies upsetting her.

Again this went well to begin with but gradually the reports turned more negative. She wouldn't eat much. She would sleep for extended periods - I'm sure to avoid socialising - she would withdraw into the corner of the room and lie on a beanbag or she would gravitate outside when she could as there was more space. I had meetings and the consensus was that I needed to be firmer with meal times and bed times. I blamed myself. She would make herself sick in the car on the way to work and struggle and kick in her seat all the way home. A few times I had a call to collect her as she had a high temperature and once in the car and leaving work she would stop crying and start laughing 'ha ha fooled you!'.

I began to worry about her and felt awful leaving her each day so eventually I reduced my hours at work. I thought it might help if she was there less but it didn't and whilst the nursery encouraged me to increase her days again for the best everything in me was starting to resent her being there as much as she clearly was. We decided to go our separate ways when they explained that 'they couldn't cope with her level of need and maybe a nanny would be more suitable'. Autism or any medical explanation had never been suggested so I internalised all the feelings of sadness and failure and blamed my parenting again.

I needed to work to retain a piece of me so my mum offered to look after L two days a week and I changed jobs to accommodate this. She preferred being at nannies but it wasn't plain sailing and she often pined for me all day but would become aggressive to me and/or my mum when I came home from work then rage all the way home before falling asleep in the car then waking up once we got home and raging again before eventually going back to sleep.

I knew that she needed to keep trying to mix and socialise with others so I thought building her up gradually might help. We would go to a park or a toddler group once or twice a week but they would be a disaster. She would either cling to me or point or drag me away arms flailing at my face. After one particularly bad experience I left after 10 minutes with hot tears falling down my face. One of the other mums must has seen my distress and spoke to a member of staff as I had a call later that afternoon from the receptionist asking if everything was ok. Another blur of appointments, health visitors, SLTs, Paediatricians, OTs, Dieticians and a horrible suspended period of limbo until we had a diagnosis of ASD amongst other things.

She was slowly integrated into a playgroup setting who were fantastic with her and me, supporting us both and even coming along to the CDAC assessment to see what went on as she was the first who had been assessed so early. Playgroup had gone ok the first year so we kept her there for her nursery year as we didn't think she would cope with the upheaval of change. The playgroup had rightly got busier as they were doing such a fabulous job but the second year was more traumatic for L as new younger children were arriving who cried alot and scared her. She would hide in the toilets or stick to her one to one like glue. However with her diagnosis I was hopeful that school would be a fresh start with everyone on the same page and my experience and knowledge of L better.

Reception has nearly finished and generally it has gone well. To her teachers she is progressing and settled. However they don't see everything that happens behind the scenes. From the 45 minute meltdowns in the car park because being at school all day has taken everything out of her to waking six times in the night, constantly grinding her teeth, anxious about whether there is assembly in the morning. From waking up at 4:30am but still being late because the demands placed on her to get ready and go to school are too overwhelming today, to the toileting accidents which occur on a daily basis. However, I am her expert now and over time am learning more about her and what works best. I am more confident in my requests and able to fight for things which I feel she needs. I don't know what the road ahead holds but we are on it together every step of the way.

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Thanks for taking the time to read. Comments are much appreciated, and sharing on social media could help get these posts to people who have still not heard about PDA. The PDA Society website has a huge range of information about Pathological Demand Avoidance.

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 Defiant Disorder) but there is a distinct difference. My explanation can be found here in my post the difference between PDA and ODD.

A variety of other experiences of living with PDA can be read using the link Our PDA story series.

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.

To find out more about our experiences, please check out our 'About Us' page. If you are looking or more information on Pathological Demand Avoidance, why not try some of these, my most popular posts?