Wednesday 27 May 2015

This is our PDA story (week 14)

Stephs Two Girls May 27, 2015 #PDA, autism, our PDA story, Pathological Demand Avoidance, PDA, PDA Society, This is our PDA story

Welcome to week 14 of 'This is our PDA story'. This series tries to explore the many aspects of living with PDA (Pathological Demand Avoidance).

PDA is one type of Autism Spectrum Disorder. It may seem to be a 'relatively' new diagnosis, but it was actually first realised in the 1980s, over 30 years ago. There's more information about the history of PDA on the PDA Society's website (www.pdasociety.org.uk).
This week may not be an easy read, but I think it's important that others understand how difficult living with this condition is for some families. It is sadly not the only story like this I've heard over the past 6 years since our own diagnosis. Too many people are struggling to go on, and they need help and support - but there is so little of that out there.

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When no.1 was born we lived abroad. She was challenging from the start - dodgy scan at 23 weeks, born premature at 34 weeks, wanted constant 1 to 1 interaction, didn't sleep much. I always considered her to be challenging in a good way; all that constant attention seemed to make her incredibly intelligent. By 2 she knew all the letters of the alphabet, could count to 20 and know what it meant and spoke in 10 word sentences. Then we had to suddenly move country, leaving our insulated life behind. She seemed to turn from a permanently happy little person into one that screamed a lot lying on the floor refusing to move. No.2 arrived. No.1 never really liked her. I couldn't leave them in the same room together. But life jogged on.

I started trying to get help for her in 2009, age 6, when she started talking about wanting to be dead. That was 1st CAMHS referral. I was sent on parenting course. No.3 baby arrived in 2011. 2nd CAMHS referral in 2011 resulted in bereavement counselling for no.1. 3rd CAMHS referral started in 2013. By this time I had no faith in CAMHS. They had already spent 4 years telling me it was all my fault - lack of boundaries, lack of consequences, you know the script.

In Oct 2013 I 1st approached social services for help. By this time active school refusal had begun. She was 10. Unluckily, the allocated social worker seemed to be stuck on proving that all behaviour was a result of my inadequate parenting. The SW told lies, was manipulative, threatened me with removing the children etc etc. The on-going trauma of multi-professional meetings began at school in Feb 2014. I was very honest from the start but all my words were not listened to or dis-believed. I started fighting for help and support, requesting the assessments that one needs in order to be considered eligible for help. The SW refused. Her line manager refused. I asked my MP for help. He didn't help. I enlisted an advocate. His excellent letters were dis-regarded. No.1 had been receiving DLA from Feb 2014, but social services refused to believe that she was indeed disabled.

At last, in June 2014 no.1 was transferred to a specialist CAMHS team and as a result, was diagnosed with ASD. Not an accurate diagnosis, but hey-ho, now at least I thought I would start getting help. Silly me.

The required social services assessments were at last completed in December 2014. Hurray, I thought, now I can get some help. Silly me. The indicative budget is just enough to cover 3 months of nannies. I need to use nannies so I can get out of the house to collect the wee ones from school/nursery and take them to her activities. So I wrote a realistic care plan and that is currently awaiting a response.

There has been 1 minor success. Social services have at last agreed to change my internal glass doors to toughened glass. I 1st asked them to do this (reasonable home adaptations) in March 2014. I wonder if it was the 4 days in and out of hospital (no.1 'escaped' twice) and the operation on the lacerations on her hand (the result of shoving your hand through a glass door) that has prompted the agreement of social services to actually spend some money? The doors are due to be changed in 2 weeks time. I won't hold my breath.

So here we are in April 2015. I still get no financial, practical or emotional help. Perhaps it will kick in soon, but I have my doubts. No.1 will not 'engage' with any professional, though she did do her very best from October -December 2014. That receptive time has gone now. She will not let any professional into the house. She threatens suicide and she means it. She will not let me talk to anyone on the phone. I have to wait until I'm out of the house to make any calls. She is in a permanent state of high alert; my little meerkat. Mind you, not so little. She is taller and heavier than me.

I must add, no.1 in some ways, is doing very well. She currently does one organised activity most days of the week. Obviously, a great deal of time and planning surrounds each excursion, not to mention the expense. (in order to access any activity no.1 requires a quiet house beforehand and on return, therefore siblings must be cared for elsewhere). Sometimes no.1 is happy. Her siblings get very little time with me anymore. It is very hard.

I would dearly love a real, live, human being to talk to, in the flesh. My day will come.

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As always, please do leave any comments of support below as they are much appreciated, and really help to let the writer know they are not alone, and not being judged.

For more reading, and different experiences, please check out previous weeks in this series by clicking below:

Week 13
Week 12
Week 11
Week 10
Week 9
Week 8
Week 7
Week 6
Week 5
Week 4
Week 3
Week 2
Week 1

Please do also visit the website for The PDA Society, www.pdasociety.org.uk, where there is much more information, and also www.thepdaresource.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?