Yesterday we had a visit in the home from an educational psychologist and the communication/autism advisory teacher.
To briefly recap, my daughter has been off school since March, finding the sanctuary of home the only place she can cope with, despite craving many aspects of the outside world.
Well our visitors managed to enter the gates at Fort Knox and they had to follow all instructions e.g. “don’t come past the gate,” then “wait on the mat” and finally “they can go in the living room but they mustn’t sit on the circle sofa!“
My daughter allowed them into her world more than I expected yesterday, to which I told her how proud I was for engaging with them.
She replied “I’m not getting married to them!”
She carried on beaming as she took in the praise and was still smiling back at me as she said “I’m not listening to what you’re saying now, I’m watching YouTube!” She squeezed my hand, undid one headphone and said “sorry.”
I took my cue and allowed her the time to come down, particularly from the overwhelming excitement she was struggling to curtail; having so much adult attention at the visit was taking some time to process.
We had all screamed with laughter at the toys brought over in the box that didn’t fit – each toy had been entertaining including a noisy pig that seemed to think it was a dog and animals that sung, to a pair of teeth that chattered on the floor.
My daughter had enjoyed showing them her favourite things in the house too and didn’t want them to leave. It took just as long for our visitors to leave the house as it did for them to be able to enter.
That sums up what it’s like to live with Pathological Demand Avoidance – the length of time avoiding something that you will enjoy and the extra time then avoiding it from ending.
The EP asked her to draw pictures of what she would like from a school and they summed up her inner vulnerability.
She drew her dog Max and said she would be happy if she could take him to school. Then she drew her sisters and her toy rabbit and the school had to have maths there too.
She added sketches of a horse, a swimming pool and a bar from gymnastics – all representations of the things that make her feel calm and that she could be good at.
She told them the horse had to be black and called Hank. Then she needed a white hamster, with tiny little pouches on her back, who needed to be called Honey.
Next they asked her to draw pictures of what she didn’t want in a school or all the things she didn’t like.
She sat and tried to think about whether she could follow this demand. I tried to give her some help and reminded her she complains the playground is too noisy.
She sat quietly for some time and the pencil was still frozen in her hands, then she leapt from her seat and ran out the room screaming “Nooo! I’m not doing it anymore!”
We stopped there and she took control of the situation saying she wanted to show them the upstairs (I did laugh that they could go up there at their own peril).
At the top of the stairs she showed them her toilet and said “this toilet needs to be in my perfect school.”
I know deep down she wasn’t joking.
Going to the toilet independently causes huge anxiety for my daughter – despite the fact she can do it and is very able to perform these tasks by herself.
The simplest demand of using a toilet cripples her with anxiety and can be one of the needs she feels unable to communicate verbally.
Once they left she completed a form that helped to identify how she feels. I had said that I didn’t think she would do this, usually she shutdowns if I ask about any of her feelings, so I approached it gently and in a PDA friendly way.
The answers were heartbreaking and were words I weren’t ready to hear as a parent. I will post about them at a separate point, once I have time to digest as I feel that they help to explain why these last few months have been so explosive.
It’s a turning point too.
These words will help fight for what she needs, no matter how hard they are to process, they are enough evidence right there.
One day, just one day, I hope we can find the ideal school where she gets to take her pet.