Words, real words. I've been waiting for 13 years to hear Smiley say some real words. And I just can't give up, because more than anything I want to have a real conversation with her. She does 'talk' and communicate, just not using words.
When she was little I tried every pre-speech exercise I could find with her:
She learned to blow little pieces of tissue paper off my hand.
She can now use a straw to give herself a drink because I kept squeezing cartons of juice into her mouth until she got the idea.
I gave her different tastes, and tried to help her to form different sounds.
I praised every effort that she made.
She learned about turn taking and looked at flash cards.
She makes choices every day. She chooses new clothes, which DVD to watch or toy to play with, and even the colour of any new equipment. Photographs and pictures are used to give her choices, and to let her know what is happening next.
Most of all, I always try to answer her when she vocalises.
Through her school, she learned to use a Big Mack - a giant switch attached to a tape recorder so she can play messages with news from home and school: It gives her a voice of sorts.
She now has a whole set of different sounds and actions that indicate her needs, and a communication book which explains all of them. This goes with her everywhere. Next I hope to get an iPad, which will give her even more opportunities to communicate and hopefully the chance to play some computer games!
But I still want her to talk.
There are two memories that haunt me:
The first time I saw a group of children with severe disabilities. They were silent, dull-eyed and withdrawn; as though they had given up on life, and lost hope that anyone would ever be interested in them. No way was Smiley going to end up like that.
Even worse was the visit to a service that was offering a place to Smiley. It was in the grounds of a huge complex, but the building for the children with severe disabilities was hidden away at the back of the site. Not like the bright shiny school, which my daughter was not allowed to attend. This service did not then provide any teachers for children like Smiley, despite her Constitutional right to an education.
I so clearly remember being ushered into this grey room. About six small children could be seen, some in standers, others in chairs, one reclining on a mattress. One was holding a rattle, the others had no toys. Mostly they were staring into space. Three staff were talking and filling in forms in one corner of the room. I went over to one of the children to say hello, I picked up a toy that was on the floor and asked if he would like it. He made a sound, so I gave it to him.
It was then that I heard it: very indistinctly, but definitely there: "Thank you," he said.
"Oh yes, he can a bit," said a bored-sounding adult from the corner.
I actually wanted to thump her. If Smiley had even one word, I would be working with her night and day to get more. I just felt desperately sad for these children. Were the staff not interested in them at all? And why were they not trying to impress me? After all I was there to see what I thought of the service.
I soon found out why. I was told that this was the only thing available (not true as it turned out). It was implied that I should be grateful for anything I was offered. As though I desperately wanted to be relieved of my child.
"Sure, where else would you send her?" was the response from the (now very senior and doubtless well-paid ) manager at this service when I politely expressed doubts about its suitability for my lively inquisitive daughter.
Later I discovered that there were some very dedicated staff in that unit: I had to send Smiley there for a while after CD was born because he was a very demanding baby and I could not give her the time that she needed. But after that visit I vowed that I would find somewhere suitable for her, no matter what I had to do. And I did.