Saturday, 15 April 2017

The art of communication

At 19 months Bella wasn’t talking, she wasn’t even attempting to talk. She was my first so I just took it that she was a late starter and never looked much further (once I’d scoured the forums of mumsnet etc. that is!)

She is now almost 7 and is classed as non-verbal or non communicative or something similar (this does not mean she is quiet! !) She can physically speak and she does, all the time. She has a random little dialogue which includes snippets of TV shows films, songs and words which she has an affinity with. This is officially called Echolalia and it means i have to watch what i say as it can pop up in her monologue a week later!
When it comes to communicating, you know chatting, conversation…that’s a whole different story. She has learnt, with a lot of help over the past two years to verbally request items such as food, drinks and occasionally buggy or car. 
We ran a fundraiser to buy private speech therapy over the summer before she started school as in our area an Autism diagnosis goes hand in hand with getting chucked off the list for NHS speech therapy. 
I know, craziness! If they can’t cure you (and there is no communication cure in autism) then you have to go private to at least learn some skills. We are a single parent family on benefits so you can imagine the prospect wasn’t great. Thankfully friends and family came together and we got her an intensive course where she learned to use basic PECs (picture exchange communication.) These come before speech and some children (and adults) use them to communicate all kinds of needs and wants.
PEC’s image courtesy of

Before this the only way she could communicate was by taking my hand and leading me to the item she wanted, this invariably ended in a lot of frustration on both parts as I was really having to guess and just show her everything in the vague area. PEC’s were a turning point and now that she uses them every day at school and she is quite the expert, the early days were tough as she had to be manipulated to touch the cards which she hated.
At home now we don’t use PEC’s as they just weren’t right for us, she can now 80-90% of the time express herself with a simple
“I want crisps”
“I want orange juice.”
The list of things she can ask for is huge thanks to the fact that her reading, bizarrely is very advanced. She tends to always phrase things as she has read them on the packet so will ask for
“I want chocolate chip brioche rolls” very regularly which is a joy to hear. Sometimes she gets muddled up like today when she asked for doughnuts but meant Doritos.
There is still no chat, I never know what she has done at school, what she is thinking, I can’t ask her what she wants for her birthday or much else. 
It doesn’t usually bother me at all as Bella is Bella and it’s never been any other way but now writing it down I start to wonder will it come
I’ve always been insanely positive and said it will, but what if it doesn’t? I’m not really sure how I feel about her being an adult who is really not verbal in the way the world expects. 
One thing that doesn’t concern me is that she is smart, she gets what she wants and although  she needs help with the most basic of personal tasks she has some in built intelligence. She knows how to distract someone long enough so that she can nick their phone out of the other hand...and she has done…to strangers! Yes it’s called theft but we gave it back and she is very cute

Tuesday, 4 April 2017

Time to end the schools stigma.

My daughter Bella (age almost 7) goes to a special school *insert shocked/pity face* Sometimes I call it that and often get the faces I described above, but more often I call it an Autism specific school because that’s what it is. I’m not sure if this is a real term or one I made up for myself but I like it.