When Mollie was about six years old she first started to avoid going out. It wasn’t anything serious, at that time, but it very quickly grew into a very difficult situation.
This is roughly the order in which life shrunk both for Mollie and myself.
- School was the first social situation that Mollie actively avoided eventually leading, despite different placements and strategies, to complete school refusal.
- Avoiding play areas and understandably so due to her high levels of anxiety and the frequent outbursts that she would have due to becoming totally and utterly overloaded in such situations.
- We used to watch Jake play football on a Sunday morning, it was always hard work and hardly worth the effort given the amount of attention that she required during the match. This also became an occasion that Mollie would point-blank refuse to leave the house for.
- In the blink of an eye and I am talking only months, Mollie was refusing to leave the home for anything at all other than for activities that appealed to her.
- My husband would have to come home from work if I required something from the shop or if Jake needed taking or collecting from school.
- We soon became used to juggling life around the fact that Mollie was virtually housebound and organised our daily living with military precision so that Lee’s work was affected as little as possible.
- She played out in the street with other children which was a disaster and seemed to push Mollie to the absolute limits of what she could cope with. When she stopped playing in the street I was relieved, the stress that we endured as a result of the highly volatile Mollie that would storm into the house and unleash all of her pent-up anxiety on us became unlivable with.
- It was around this time that her second school placement also failed. The anxiety of attending school and trying to cope with social exposure on a daily basis was just too much for her to contain. Penultimately this resulted in Mollie having to be restrained to protect the safety of herself and for the safety of others.
- At this time Mollie could still be tempted to go out but our options had become increasingly limited to about three local venues or novel days out to attractions outside of our immediate area.
- Her third school placement eventually came to an end in April 2013 following only 8 months. It had been a bumpy ride peppered with school refusal, bullying, huge anxieties displayed at home, a growing awareness from Mollie that she was struggling to hold it together at school and the black shadow that followed her daily. The black shadow that hung over her like a cloud was the fear of restraint.
- Following the breakdown of her final placement we have gone through somewhat of a journey of discovery with Mollie. Growing awareness of her differences, lack of self-worth and low self-esteem, seeing no future for herself, wanting to be normal, huge sleep issues and periods of depression and complete withdrawal from the family.
- We appear to have worked through many of these issues, which have all been detailed in previous blog posts, but another one has quietly crept up on us.
- At the end of August we went away for a mid-week break to Blackpool at Mollie’s insistence. Mollie could only cope with three days of social exposure, the fourth day was a struggle resulting in a very early return to the hotel and we came home on the fifth day.
- This is a first for us and was a worrying sign that Mollie appears to be able to cope less and less with exposure to the outside world.
- Since our return home approximately six weeks ago Mollie has only left the house on two occasions.
- Even our last few bastions of outings that she rarely, if ever, refused to engage in are now off-limits. Daily offers to walk the dog, go swimming, the cinema or Gladstone Pottery Museum which were all previously dead certs to get her out and about are now off-limits.
- She stated that she wanted to go but that she just couldn’t. She wanted to go but that her legs just wouldn’t take her out of the door.
It would be natural to assume that Mollie’s inability to leave the home was purely down to the demands associated with it. However, I feel that it is important to recognize that some children may develop PDA Plus. This is a term used to describe how some children may, as a result of their PDA, go on to develop other psychological and behavioural issues that need to be looked at and treated as a separate issue. A very knowledgeable friend who is very experienced with PDA refers to these children as possibly having PDA plus.
So is it possible that Mollie has PDA Plus? Have the years of social exposure leaving her vulnerable to public meltdowns caused a secondary condition, does Mollie now have Agoraphobia as well as PDA.
The following link to an article about Agoraphobia would suggest that this could be a possibility. The profile and symptoms certainly fit with Mollie, agoraphobia is generally caused by the anxiety associated with social places and the fear of having a panic attack in public with no feasible escape route. Perhaps some individuals with PDA find social exposures so traumatic and so stressful that becoming Agoraphobic is a natural progression.
Concerned that this had become a real possibility I decided to try to broach the subject with Mollie. It is very rare that she actually opens up or discusses anything and so what was to follow was a real breakthrough. I asked Mollie if she wanted to go out but couldn’t or if she actually didn’t want to go and just preferred to stay at home. It was important for me to make the distinction between that of either wanting to stay at home or that of having to stay at home. Mollie replied that she really wanted to but just couldn’t and so I suggested that perhaps we could get some help and medication for her. She said that she didn’t want any medication and that the changes needed to come from within. When I explained that lots of people need medication to help them get better from things that may have happened that had made them nervous or frightened we had a light bulb moment of understanding from Mollie. She went on to explain how she felt which I have bullet pointed below.
- I can’t go out because I am so scared of what may happen, what someone may say. Even someone saying “don’t touch that” scares me because I feel embarrassed that I have been told off. Then they will be watching me all day, waiting for me to do something else.
- I don’t even like looking out of the window because I don’t want anyone to see me.
- Everyone’s eyes are watching me all the time, waiting for me to do something that they can tell me off for.
- It been worse since I was held down at school, it was terrible, all I wanted to do was be by myself to calm down.
- They wouldn’t leave me alone, following me everywhere, watching me. I kicked out and ran away, I just wanted to sit on a bench by myself to calm down.
- When they caught me I was angry and just wanted to be on my own but they held me down.
- All my friends saw me being held down, the looks on their faces I can remember now. The shame and the humiliation, how could I ever go back.
- Even when you arrived they wouldn’t let me go so that I could run to you. I couldn’t breath, it was so scary and so awful.
- I often imagine that I’m in the school playground and the whole school witness me being held down.
- I know that this won’t happen when I go out with you but I always think about it. I can’t explain why it stops me from going out, I know it doesn’t make sense.
- Never trust a teacher or even think that they are your friends because they just stab you in the back.
- They didn’t care about me they only cared about their job and money.
- She sobbed as she opened up about how deep-rooted the actions of restraint had become and how they had affected her.
- The good news is that she said that she felt better for talking about it.
The school in question was and probably still is a wonderful school, the staff in question were fully supportive of Mollie and went to great lengths to understand and implement PDA strategies. I understand why they needed to restrain her, she was attacking a teacher and they were worried that she may run away from the school property leaving her vulnerable and in danger. As soon as they had no option other than to restrain her I was called to go over to support her. Had they not responded as they had done and she had run off and been knocked over by a car then I would have been the first demanding to how this could have been allowed to happen.
The cautionary tale in all of this is that we must recognize how such actions may look and feel for the child involved, not to mention the long-term effects that this is now having on her psychologically. Can we learn from this and develop strategies to avoid restraint unless it is absolutely necessary? I can understand how, in this case, it was felt to be necessary but that doesn’t mean that we can’t learn from it. Perhaps we could provide complete privacy for a child in meltdown, after all it is not a spectator sport. A place to go where staff feel that they can safely allow a child to recover and regroup whilst not under the watchful eye of a member of staff. A small spy hole may be enough to allow staff to feel comfortable that the child is not harming herself whilst affording the individual far more privacy.
I think that it is also safe to say that the following quote from another parent of a child with pda is very relevant and should be heeded “Socializing may be extremely important for the typically developing child but for a child with PDA the results of that social exposure can be TRAUMA !!” So perhaps for some of our little ones less may be more.
It seems to be quite common for some children with PDA to reach the stage of being completely housebound. I wonder if support for Agoraphobia may help some of them deal with the issues that have confined them to the house and give them the confidence to occasionally dip their toes in the outside world.
This is the direction that I hope to go in and only time will tell if it brings us any positive results.
For more information about PDA please visit http://www.thepdaresource.com/