Well this week has certainly been an interesting one and so I thought that I would post a quick update on the latest developments in our PDA household.
Mollie, Sleep and Self Esteem
As you may be aware, if you are following this blog, Mollie’s sleep – wake cycle has been all over the place in recent months. Sleeping all day and awake all night, regularly staying awake for 24 hours plus and basically she was just all over the place. I decided to just go with the flow and let her get on with it. I didn’t moan, complain or try to entice or encourage her into a more conventional pattern of sleep in the hope that she may eventually be able to turn it around under her own steam. Not placing any demands on her re sleep was paramount to ensure that this didn’t descend into a battle of wills which would have just meant that her desire to not comply with the normal wake / sleep cycle that society dictates would have intensified. I am also aware of genuine sleep disorders that cause this type of sleep disruption and so I didn’t want to make a deal out of a situation that may have been beyond her control.
- For approximately one week now Mollie has been able to maintain a normal sleep / wake cycle which is fantastic.
- She insists on going up to bed at 10.00pm but also insists that either me or hubbie go with her, thus keeping control.
- She then watches netflix in bed but she is making a determined effort to go to sleep at about midnight so that she is awake in the day and keeping her sleep cycle under control.
- I am under strict orders to wake her up in a morning at between 9.00am – 9.30am so that her body doesn’t fall out of sync with her new routine.
- She has been given full control of her own sleep cycle and with that control she has naturally decided to try to keep in line with a 24 hour sleep / wake cycle.
- This may not last forever, things rarely do with PDA, but it is further conformation for me that if a child with PDA feels completely in control they tend to naturally want to fit in with the norm.
- Instigate the boundaries, demands and what is and isn’t acceptable and they just kick back at it and avoid complying at all costs.
We have gone through a turbulent few months with Mollie including the collapse of our last school placement, complete withdrawal from her family, complete loss of self-esteem and a growing awareness of her differences and a yearning to be normal coupled with self loathing. I feel that we are steadily turning a corner, there will be many more to turn on our PDA journey but for now the straight open road is a pleasant sight.
- Weeks of not forcing myself or trying to instigate engagement with Mollie are beginning to yield results.
- Letting her do exactly what she wants while offering tempting activities have helped to re-establish our relationship.
- Mollie altering her sleep / wake cycle have allowed us to have further engagement with each other.
- She is now actively seeking more engagement with her family and is offering us far more loves and cuddles than we have previously being experiencing.
- She seems happier and more content within herself and with us.
- Mollie appears to be reintegrating herself back within the family rather than sitting on the fringes in a world of her own.
- Perhaps a period of realisation, self-awareness, grieving for the life that you see others living that has been denied you is all part of the healing process.
- No doubt we shall go through this with Mollie again but for now it seems to have passed and is being buried beneath a new layer of growth and self acceptance.
Education and a New Educational Psychologist Calls
I was lucky enough to have been gifted with the most wonderful, compassionate and caring Educational Psychologist when Mollie was four. He was trained by Elizabeth Newson alongside Phil Christie and so he truly believed in PDA and was my biggest advocate and supporter. Eric Page was the first person that really listened to our plight and didn’t judge our difficulties on our parenting skills. I will be forever grateful for the remarkable difference that he made to our lives and for the warmth and compassion that he always showed Mollie. It was with great sadness that I heard about his sudden passing earlier this year, it had been very unexpected for everyone and without warning. Due to this tragic news Mollie had to be allocated a new Educational Psychologist and I was very wary to say the least, my trust is not something that is easily gained.
It is with great relief that I can say that our meeting with Mollie’s new Educational Psychologist went extremely well, I am of course speaking from my own perspective. He may well have left our house and reached for the Valium but he appeared to cope with us ok. He had previously been Eric’s superior and he has mannerisms that are very similar to Eric’s which did put me at ease. There will never be another Eric but at least we appear to have someone who has, perhaps, been made out of a similar mold.
He is extremely knowledgeable about autism and does appear to think at a much deeper level than most professionals that I come into contact with. You can’t just throw generic strategies at every child with autism and expect them all to react in the same way which is something that he appears, unlike others, to understand. A sleep routine is not going to result in Mollie happily going to bed and going to sleep because she requires a different level of understanding and a radically different approach than the standardized run of the mill ones that are so frequently pulled out of the bag for children with sleep disorders.
He appeared to be very happy with the environment that we have created for Mollie and the efforts that we are making to ensure that she has the opportunities for as much incidental learning as possible. Hopefully this will go some way to helping us gain permission to home educate from the local authority.
I love meeting people who know so much more than I do so that I can continue to learn and grow in my knowledge of autism. One day the new Educational Psychologist may come for a visit and disappear for two days during which time I shall be interrogating him in order to extract and absorb all of his knowledge.
CAMHS and Our One Way Ticket To Coventry Appears To Have Been Revoked
To cut a long story short and not wanting to go into too much detail I was basically completely ostracized from my local mental health and ASD services following several disagreements culminating in me basically accusing my local ASD diagnostic team of not having a clue of what they were doing. This, it would appear, did not go down well and I can only assume that I was labelled as some sort of neurotic, crazy, above her station, Munchhausen parent that would stop at nothing to plant a label on her children. This was fine by me because I really had no desire or need to require the services of my ASD diagnostic team unfortunately I didn’t realise that this opinion of me would permeate throughout the whole service.
- Eighteen month ago, as far as I understood it, Mollie’s Pediatrician refereed Mollie back to CAMHS for an assessment of anxiety and hyperactivity levels to either rule ADHD in or out with a view to liaising with colleagues re a suitable medication package.
- Due to a catalogue of errors coupled with a very obvious brush off from local services and their painfully obvious reluctance to have anything to do with either me or Mollie this referral never actually produced anything other than broken promises and 18 months later we were still in limbo.
- Following several conversations pleading for some help due to Mollie’s complete withdrawal from life, her family and her depression we appear to have finally made a break through thanks to the empathetic ear of a person within Camhs whom I have had no previous experience with.
- Hopefully the slate can be wiped clean from both sides and the old baggage be thrown in the skip. The most important person in all of this is Mollie and so sometimes the past is best left in the past for all concerned.
- We have attended an appointment today to start the process of exploring the possibility that Mollie may have ADHD and that if she is medicated then this will need taking into consideration.
- My hope now is to put my past with my local health service behind me and to move forward in a much more positive manner with a new set of Professionals that will hopefully see me in a different light than the one that may have been painted of me in the past.
I have thought long and hard about including the CAMHS experience in this post because I don’t want to upset the very new apple cart. However I have mentioned in previous posts about my exclusion from services and so it would seem strange to be suddenly accessing such services without offering an explanation. This post is not meant as a criticism but, as hopefully, the beginning of a new and more successful chapter in our relationship.