Emma introduces us to her son Arthur and explains how our Sleep Advice Service was such a support.
Tell us a bit about Arthur
Arthur’s favourite film is ‘Inside Out’ – he will watch this 4 or 5 times a day. His favourite emotion in the film is Disgust. I think this is because she dislikes broccoli and she is green which is his favourite colour!
He has always been fascinated with cars, Disney cars in particular, and emergency vehicles. He really loves soft toys so we have lots! Arthur doesn’t like school, he doesn’t like to be told no, he struggles with busy places and noise. He is very good with numbers and loves to draw.
How does his condition affect them and your family life?
Arthur has been diagnosed with Autism, developmental delay and demand avoidance. He has been out of school for almost a year as he can’t cope with the demands put on him in mainstream – noise is a very big issue for Arthur. We are waiting for a place at a special school.
Arthur struggles with social communication so we don’t always see the triggers for his meltdowns. One thing he is fine with today may cause a meltdown tomorrow. He hasn’t got any friends which is heart breaking. Being at home all the time is really affecting his wellbeing and mental health but he has got to the point where he doesn’t want to go anywhere.
Family life is hard. We have no childcare at all so one of us needs to be at home with Arthur constantly. My husband and I haven’t been out on our own for almost a year, even food shopping is done either on line or by one of us. We have a 17 year old who has struggled to understand why Arthur is how is he and why he has meltdowns out of what appears to be nowhere and at times it’s difficult for us to understand.
Arthur will not sleep in his own room so is in our bed every night. Our lives revolve around Arthur and this can be very draining.
Why did you ask for help?
It was taking Arthur between 2 and 4 hours to go to sleep. He does lots of vocal stimming mainly counting or adding numbers together and he finds it very hard to clear his mind and self-regulate. I also wanted help to try and get him to sleep in his own bed.
What information or support did you receive?
Our Sleep Practitioner sent me lots of information by post and email. He was a great listener and also sent me other relevant information that he thought would help me.
He went through lots and lots of things I could tweak or possibly change in Arthur’s routine. He never once told me what to do which was good. Arthur has so many complex needs and was out of school by the time I first got in touch so the support of someone just being there to listen and give me the confidence to try things that had failed in the past was everything .
What difference has our help made to your child and your family?
Even though we didn’t get Arthur to sleep in his own room or reduce the time it takes for him to get to sleep I am still really grateful for the support I received. It was good to have someone there who understood out situation, who didn’t preach and who helped me believe I’m not failing my child, that I’m actually doing OK and that it is OK to ask for help. There is support out there you just have to ask.
