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"I had to call them every day for a few weeks to get another appointment"
Amy Campbell
Introduction,
I'm Amy and Ethan is four he is my only child at the moment but another one is on the way.
When did you first suspect or have concerns about your child’s development?
Ethan started to talk when he was about one he would say a word but never say it again. He never had much eye contact but it was never something I worried about. Also from about one year old he always would hand flap and make a continuous noise, I was never worried about this and just thought that he was excited and happy. It wasn’t until his health visitor started questioning this that I realised there may be something wrong. By the time Ethan was nearly two he still wasn’t walking and didn’t have any words, his health visitor suggested Little Orchids which at the time I thought was like sure start and was quite happy to send him. After a few months of him starting Little Orchids I realised that he wasn’t developing like any other child his age and that Little Orchids was a special need centre.
Did you have any other health concerns in general?
Sleep was always a problem for Ethan, he would be up to all hours of the morning jumping around the bed he never seemed tired, he also and still does have bowel problems, he suffers from constipation quite a lot.
Who did you first turn to for help?
After accepting the fact that Ethan might have Autism I sat down with my family and my partner to say that it was something we were taking further so I then called Ethan’s health visitor and told her what I thought and she got the ball rolling.
Where was your child referred?
Ethan was already at Little Orchids when I had called the health visitor so after that she referred me to the Paediatrician to have him assessed, we also were sent to the occupational and speech therapist.
When was your child referred to the Autism Spectrum Advisory Service, what help did you receive and how long did you have to wait?
We saw the paediatrician when Ethan was about two it wasn’t until July 2009 he was put on the waiting list to be assessed it was then a year later he was officially diagnosed we were then referred to the ASD team.
What process were you involved in to get your child diagnosed?
Getting Ethan diagnosed was the longest process, he was on a waiting list for nearly a year when we finally got an appointment for his assessment which was cancelled twice because they were moving offices, I had to call them every day for a few weeks to get another appointment and I then got a cancellation last minute. They saw him first at home and then I took him to them were they played different games and had some pretend play I think Ethan’s was a birthday party.
Did you receive any support or training at this time?
I received lots of support from parents and staff at little orchids but that was all good will. we were able to apply for some financial help before Ethan’s diagnosis but it wasn’t really until he was diagnosed that we were sent things about training and other support.
How did you feel about what was happening and what support did you receive?
At the start all I wanted to do was cry I didn’t fully understand it all I just kept thinking about how he would be treated by others, I think that’s the time I would have needed support but it wasn’t there. Its only really now and by finding it myself that I have support around me.
What stage of the process are you at now?
Ethan is now officially diagnosed and is going to a special needs school he also had his statement of special educational needs. He is doing very well at school and we are in the process of toilet training, he is learning PECS and makaton and his speech is getting a lot better.
autism-whatnext@hotmail.co.uk
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