Some of you might recall me yammering on just over four years ago about having a daughter or whatever. My little princess, Ivory-Rose.
For about a year now we've been unable to get Ivory to speak. She can count, spell, sing along to music, repeat what you say and will happily respond to questions. However she wont start or hold a conversation. She cannot sit and watch a video or a movie because she cannot understand the point of it.
After battling with the NHS to get her in to see the right people over the course of that year, we now finally have her official diagnosis. She's on the Autism Spectrum. Exactly where we do not know, and we have a load of new assessments coming up before she should be starting at school, but currently we've been advised that her speech and communication remains at the level of an 18 month old.
This is of course very upsetting to both me and her mother, but not because of the diagnosis. That came to us with some degree of relief. We're upset because it now means Ivory-Rose will grow up in a world where she will be considered a lesser person, because of something that she has absolutely no control over.
She isn't broken. She isn't worth less than anyone else. She's a human being.
TWHL is the best community I've experienced online, which is why I feel I can post this journal with no apprehension. I don't need to tell any of you this, but keep being good people. Stand up for those who need help and above all, be patient.
Her position within the autistic spectrum has been described as spiky. She appears to have strengths and weaknesses within every aspect. Her motor skills are top notch, while her fine motor skills are quite far behind. So she can run around, climb, jump, kick a ball and so on, but cannot hold a pen correctly or draw a shape. This also makes Makaton quite difficult for her which is unfortunate given her speech and language delay.
Her S&L delay which is affecting her communication is actually being considered an entirely separate matter at this point. However, vice versa, her autism is affecting this in other ways. Apparently, when a child has a speech and language delay, they fall back on their motor skills and communicate via gestures. Ivory cannot do this because she lacks the context behind what she is trying to say.
It's a wonderful double edged sword... In spite of this however, Ivory has been approved to go to the school of our chosing, with additional funding for one on one support. She will be going for the morning session every day which is three hours of a more structured, learning environment. The educational psychologist is confident that she can start going full time as soon as the new year, depending on her next few evaluations.
We're at the beginning of a very long journey with this. Thanks for listening.
Ivory is now four years and three months old and should be starting primary school in September. However, it now seems as though that is not going to happen. Instead, she will need to stay at home most days, and attend primary school only in the afternoons. Why?