This morning started with a lie in! Bliss! With my dad finally realising that screaming and shouting at her wont work, I didn’t have to jump straight out of bed to save her!
Not too long after I got up I received a phone call from someone I admire greatly, Jane Sherwin, author of the blog Pathological Demand Avoidance- an autistic spectrum disorder
(found on my blogs I follow or at http://shiggs55.wordpress.com/ and can normally be found replying to my posts!)
We discussed PDA and how it affected her daughter at dinky’s age. I listened and talked about dinky and school. Again I am told that dinky definitely has PDA. I should really get used to it and, although in my heart of hearts I know she does, it still comes as a little bit of a shock. It is that part of me that is waiting for the confirmation, the part that listens to the things from the school, the part that listens to other people who do not really know her. It is the part in me that always doubts myself.
We had a good natter, and I now have some things to look out for and some advice regarding getting her a statement.
When the call ended, I looked at the time… it was 11.30am!!!!
I had forgotten to print off the forms! Luckily my dad had raced dinky getting dressed. so she was ready to go. I had to make sure I was ready to go and filled in the forms, making sure I had her DLA award letter. I feel the need to constantly prove her entitlement to go on these things. Maybe it is my battling myself again. I feel that without the diagnosis that she isn’t entitled. She is however, so I take the letter.
My dad has dinky half way down the stairs while I grab a drink, some bribery tools, our bus passes and my keys and head out.
Dinky has my dad holding the wrist reins and we set off. I can sense that she is a little off, hopefully she will be ok when we get there.
My dad plays rock, paper, scissors with her on the bus. She starts using her baby two word sentences and he tells her to stop it, to use her words, that she is being silly. I have to whisper to him that it is her anxiety. He doesn’t really understand. I knew he didn’t read the PDA booklet! Honestly!
We get there and we have to wait at reception, the till has one of those sticky fuzzy things attached to it. So dinky is pulling my dad along by the wrist rein and jumps up to grab it saying “fuzzy, fuzzy”. Again my dad tells her off and is angry at her for using baby talk. I shoot him a look and he stops.
We go into register her for the afternoon and she gets all hyper and looks about ready to bolt. Once we get the paperwork done we head for the bouncy castle. She is straight on! She spends a lot of time on the bouncy castle. I tempt her into the trampoline. She gets on and the coach is trying to get her to jump on the +. Of course Dinky doesn’t. She jumps around the +, falls on it, runs around it, anything but jump on it. When the coach pushes, dinky runs to a different trampoline, and tries to play ‘catch me if you can!’ My dad starts to play it with her I on the other hand distract her down. I manage to get her off and she says she wants to try climbing.
Cool, I loved climbing as a kid. We took her over. I laughed at their from and told him that dinky wasn’t capable of ensuring she remains safe, she wasn’t capable of ensuring the safety of others and she certainly wouldn’t be able to minimise risk by being aware of her surroundings! Once that was out of the way they said we would have to wait. Dinky doesn’t do waiting. She is unable to contain herself. So my dad takes her on his shoulders for a short walk until they are ready. Even when they are ready she cant go on straight away. She puts the helmet on and then runs around. I get her to one place until the instructor is ready for her. Once he is ready we make our way over. Dinky is pulling the ropes, and not paying the slightest bit of attention to the rules she s being told. The guy said “don’t touch the metal bits”. So she touched the nearest metal bit! Once ready to climb she does ok. That is until she is about 10 feet up and says she wants to come down. Then she agrees to give it another go. Again she doesn’t go up to the top and once down says she wants to go back to the bouncy castle.
So we go back.
She plays on the bouncy castle again, then we have a little go at football, followed by art.
Now dinky is not a big art lover, but if she is told she can do what she wants, she is away.
She put a very large blue t-shirt on and grabbed the small acrylic paint tubes. She squirts one after another on the page. I tell her no. At the rate she was going there would be none left! The guy supervising the art came over and told me not to worry, to let her do what ever felt right to her. So I left her to it. She squeezed all these tubes of paint out and mixed all the colours. The guy said she was very smart. He said “ASD?”. I get fed up of trying to explain that we are waiting so I just say yes. He says the squeezing is obviously a sensory thing and so is the feel of paint on her fingers, as she spreads the thick lines of paint over the page with her hands. Most of Dinky’s paintings are hand prints and paint soaked paper. This doesn’t really bother me too much. It is nice to know that she gets something from it.
The guy asks for my email, he said he was going to send me details of other sensory art sessions coming up. Cool! If dinky enjoys it, she is happy, I am happy.
More bouncing on the bouncy castle.
By the time it was time to go she seemed to be more relaxed.
On the way home, she played rock paper scissors again. Then my dad asked me why I said yes to ASD when I think Dinky has PDA. I looked at him and said, they are one in the same. He looked really puzzled.
He had another race with dinky at home after dinner, he challenged her to get ready for bed in the time it took to make his tea.
She was ready in 90 seconds!
he then said that she had better get to bed as she has school tomorrow. She went off on one. She said she didn’t want to go to bed, she said she wanted a snack and then started slamming the door to the living room. She was throwing things around and muttering things, but I couldn’t make out what she was saying. She got on the stairs and started spitting. I ignored it. After a few minutes of her jumping on the stairs I offered her a cuddle. She had a quick hug and then went up.
She came down every 15 minutes asking for one thing or another. Thankfully she went to sleep earlier than she had at any other time in the last week! Not by much, but she was asleep at 9.30pm while I was writing this.
I am not looking forward to the school run, and I plan on having a very serious chat about how they handle Dinky at school because she wasn’t like this at her old school.
I have to get this sorted, and soon.