The previous 12 months have been a roller coaster of events and emotions which have been detailed here, in my blog, from April of 2013. In the last 12 months we have come a huge way on our journey of discovery which only really started when we abandoned formal education. In brief here is a very short timeline of events for any of my new followers.
The Past Twelve Months
- September 2012 we were fighting for a residential placement at a specialist school because I just could not go on any longer. Battered, bruised and broken I really just couldn’t go on any longer with the prospect of looking after my daughter. I was snappy, short-tempered and disengaged from her as she was with me. Together we were spiraling out of control on a path of destruction, she needed more than I could offer and I needed to restore depleted emotional and physical energy levels.
- We were granted funding for the residential placement but it never really got off the ground. Moll attended as a day placement only but following the honeymoon period she began school refusing again.
- The honeymoon period had, to some extent recharged my batteries and so now I had a choice. I could force her to stay as a residential pupil or remove her from school and give it one more crack at home.
- I chose the latter and I have never looked back. Simply removing the external pressure of school attendance, for ever, really lowered her anxiety levels.
- We attempted home education, which failed, she withdrew completely from me and all of her family.
- I then adopted a philosophy of ‘autonomous learning’ which is basically child led and not instigated by the parent. Eventually the guard that had come up to stop any structured learning gradually came down.
- Relationships were repaired and rebuilt.
- She began opening up to me, sharing heartbreaking details about how she felt and viewed herself. We worked together to build and restore her own confidence, sense of well-being and acceptance of her differences.
- Social exposure had left her anxieties so high that she had become unable to leave the house.
- We worked on this very slowly and at her own pace. She is now able to go out if and when she wants to.
- She now attends a weekly dance class and even performed in a show prior to christmas, enjoys the cinema, makes the occasional trip to the shops and we are hoping to further build on this.
- Her sleep issues are a cycle that we just run with. Weeks may be spent with her sleeping for the majority of the day and awake all night. Without pressure and under her own control she will reverse this situation and return to normal sleeping patters, we then capitalize on the times when she is alert and awake in the day.
- She is happy, bouncy and fun, this is singularly the most important change for us.
- Meltdowns are Nil.
- Impulsive outbursts still occur but are verbal in nature rather than violent. Apologies are usually forthcoming afterwards, often with an explanation. “I’m sorry I snapped but I’m really stressed today.”
- Formal Education is the least of my worries and is bottom on my list of priorities. An individual can learn, at any time in life, about history, geography, mathematics and so on.
- The most important education for Mollie is that of self acceptance, awareness, learning how to cope with socializing on a small level and feeling loved.
There is a saying that parents of children with PDA often refer to as ‘pick your battles’ however I have recently amended this philosophy in my household to “pick your objectives but don’t turn them into battles”.
Our objectives last year were the following
- Reduce Meltdowns achieved
- Reduce Verbal Outbursts achieved
- Improve my relationship with my daughter achieved
- Improve her interaction within the family achieved
- Improve her self-esteem achieved
- Reduce anxiety levels so that she was reachable achieved
It is my belief that we achieved the above by removing the anxiety and stress associated with school in conjunction with her deciding not to play outside with other children. The only boundaries that we have in our home are for Mollie to not hurt others or hurt herself and to not cause irreparable destruction to property E.G. windows being smashed and so on. With anxiety reduced right down we could then work on the areas that we had prioritized as important. However this was done very carefully, discreetly and respectfully. If I thought that Mollie was spending too much time on her computer, which she was, rather than choosing this as a battle and imposing screen time boundaries we tried a softer approach to ultimately achieve our aim. I would try to tempt her off the computer by sitting close to her engaging in activities that I knew she may be likely to want to join in. Gradually and overtime she began to choose to leave the computer screen in order to take part in other activities. Objective achieved with no meltdown, no loss of control for Mollie and no battle for power which could have destroyed our newly built bridges.
This is how we now approach everything in our home. With full control over her own life, rather than running wild, she has actually become extremely manageable by setting her own boundaries. I still have a child with very complex needs and behaviour but, by approaching things in a completely alternative manner, I no longer consider myself to have a child with challenging behaviour. This is by no means easy and takes a lot of patience and self-discipline, as a parent, to NOT just let your child get on with their own thing so that you can have an easy life. Even achieving the most basic of objectives like teeth brushing, hair brushing, interacting with the family, bathing (weekly objective), attending her weekly dance class, trying to keep her sleep cycle in some sort of sync and going to the cinema requires dedication, gentle persistence, careful persuasion and huge amounts of time. It is never a done job it is always work in progress because without the attentiveness of my husband and I she would quickly slip back. The progress that we have made with Mollie needs consistent and continual intervention.
What I Hope To Achieve In The Next Twelve Months
In the next twelve months we hope to build on and improve the progress that we have steadily made. I am hoping that the use of medication will help us to achieve even more because I do feel that we have possibly achieved as much as we can by psychological intervention alone. Mollie is now taking, without any side effects so far, fluoxetine. We are hoping that by taking the edge of her still high anxiety levels when she is out that this may help to assist her to engage in more activities outside of the home. She has scored highly on the ‘Connor’s Questionnaire’ for ADHD and so this is currently being explored as a possible co-morbid condition. Indeed one of the biggest issues we have in trying to get Mollie learn anything, even through play, is keeping her focused and concentrated. She wants to play ‘Monopoly’ and ‘Children’s Trivial Pursuit’ both of which would be educational, but she simply cannot hold her attention long enough to play it for more than a few minutes.
This years objectives
- To continue to build and gently assist Mollie to engage in more activities outside of the home. We are hoping that Fluoxetine and possibly medication for ADHD (although this is still under discussion) may assist her in these areas. Her impulsive reactions to things are one of the reasons that she finds going out so difficult because she has no control over her own behaviour. Needing full control in order to feel safe while simultaneously having no control over her own reactions must be a terrible paradox for Mollie. As Julie Daunt said to me “ADHD and PDA are cruel companions” Julia is an adult who is diagnosed with both conditions and so she speaks from first hand experience.
- To continue with the current level of support that we offer her in order to maintain the progress that was made last year.
- To improve on the current level of interaction that she has with the family which may be helped by improving her ability to focus and concentrate.
- To work with Mollie on the areas of socializing that cause her the most stress and anxiety. Hopefully we can develop strategies for her and teach her the areas of socializing that confuse her. This is easier said than done because her demand avoidance makes any sort of teaching or explaining very difficult indeed. It is a question of carefully choosing your moments for such interaction i.e. when she is at her most relaxed and happy to divulge her innermost difficulties and fears. Opportunities for this are few and far between and so you really do have to grasp them as and when you can.
- Mollie already learns a lot simply by being allowed to follow her own areas of interest. Her reading and writing has improved immensely by playing on computer games as has her general knowledge. This is an area that generally tends to take care of itself but it doesn’t hurt to give it a helping hand by ensuring that I stay on top of things and make sure that she has loads of appropriate material at her disposal.
- To help Mollie join a local acting group which she has shown interest in.
- Ultimately for her to have at least one friend her own age. This will be the hardest thing for us to achieve but I am hoping that the acting class may offer us a little pool of potential friends. I don’t want Mollie to experience failure within this area again and so this will only be undertaken when we feel that she can is emotionally ready to successfully achieve this.
I also have some personal PDA objectives for this year too.
When you are fighting tooth and nail for your child and being met with one professional after another who refuses to take you seriously, refuses to believe in PDA, offers you no support relevant to your child and ultimately close their doors on you it is very easy to become bitter, resentful and completely lacking in any respect for these individuals. Not all professionals are the same but I am sad to report that other than the brave pioneers and innovative thinkers within their own profession that most of them are, as many parents on support groups describe, ‘complete muppets’. So if you are a Psychologist, Pediatrician, Psychiatrist, Teacher, Social Worker or in any other profession whose opinion may be needed with regard to a child please don’t be a ‘Muppet’ isn’t it more rewarding to be a ‘Pioneer’ within your field. If you haven’t heard about PDA or don’t know what it is then read and learn. There is no shame in not knowing but there is in not been willing to learn about an emerging condition within your field of expertise.
- Now that I am through the worst and feeling far calmer and able advocate for PDA in a far less emotional manner I am hopeful that I may begin to be able to make some headway with my own local authority. I would ultimately like to try to offer enough evidence to encourage my local authority to accept and diagnose PDA. For me this would be like winning Gold at the Olympics. To know that the others who may follow in Mollie’s footsteps, in Stoke On Trent at least, would in the future be given the correct understanding and support would make everything worth while. Hopefully other parents will be striving to do the same in their own local authorities and knowing the tenacity of the PDA army I am sure that they will.
- I am in the process of writing a book that describes our journey with PDA, my understanding of my daughter, strategies that we have successful and so on. My objective is to have it finished and accepted my a publisher by the end of this year.
- To continue blogging and sharing my experiences online in the hope that I can reach other parents and the odd professional here and there. There are more and more parents blogging which is fantastic. In nine months this blog has generated over 30,000 views world-wide and so blogging is a great way of spreading awareness.
Very Important Please Read
On the support groups that I am a member of there are hundreds upon hundreds of parents who find themselves in dire circumstances. Ignored by professionals they are receiving no support while trying to deal with possibly the most complex individuals on the spectrum. Families are at crisis point, children are being sectioned, in desperation the police are being called out to deal with child on parent violence. One young man has been sectioned and is being held in a totally inappropriate placement. He has a diagnosis of PDA which is being arrogantly ignored by the professionals that are caring for him. His mother has no rights and is being forced to watch as this team completely and utterly continue to use the wrong strategies which only intensify his difficulties.
If you would like to help this young man and his family please click on the link and take action by emailing his local MP demanding for action and support. This needs to be done in the next few days prior to his next review meeting. Copy the link and share on facebook and Twitter, this young man must be removed from this ‘Victorian’ establishment before the damage becomes irreversible.
For more information about PDA please visit http://www.thepdaresource.com/