Caroline Goodall
My name is Caroline Goodall and I have 2 boys, Joshua aged 7½ and Tristan aged 4
We had noticed when Joshua was small that his way of playing was to line up his cars and animals, and that he really liked to have a routine, but we didn’t think anything of it until he was 3 which was when he started to have obsessions- with other children. We asked the Health Visitor to get involved and she realized that she needed to refer us on and so we met the Community Paediatrician when Joshua was 4½ (April 2007). She assessed Joshua and told us that although Joshua displayed some autistic behaviour she wanted to wait for a while and see.
Joshua’s first term at school was one of the hardest times of my life. I was totally surprised when his teacher told me that Joshua simply did not know how to talk to the other children. He did not know how to say “can I play with you?” I couldn’t believe it. He also could not express negative emotions, so when rehearsals for the Christmas play started his behaviour became aggressive. He could not cope with standing still in a large empty hall, or with the changes to the school routine that he had only just got used to, nor could he learn the words to the songs like the other children. His response was to kick, push or hit children in his class. He was even excluded for biting. Luckily, his teacher was fantastic. She spent many playtimes helping him practice “can I play with you?” She found a role for him that enabled him to be in the Christmas play. She encouraged the class TA to spend a lot of time with Joshua. I also feel that it was lucky that Joshua’s behaviour was aggressive; as the Educational Psychologist was called in to assess him very quickly and we returned to the Community Paediatrician, who felt that a diagnosis of ASD was now appropriate and would be useful. In September 2008 Joshua gained a statement of SEN and in January 2009 a TA was appointed for 20hrs support each week.
The Community Paediatrician referred us to the School Paediatrician, who sees Joshua once a year and once he is 8 years old this will drop to every 2 years. A friend of mine told me about “Occupational Therapy”, not something any professional had mentioned. I asked the School Paediatrician to refer us and in September 2008, nine months later, we saw an Occupational Therapist. She told me that Joshua had low muscle tone, hyper-mobile joints and Development Co-ordination Disorder. She brought a lot of issues to my attention and gave us loads of information. She saw Joshua twice within 10 days and then would have discharged him, except that I asked if she could see him again. She said she would try to see us again within 2 months. In October, I rang to see what was happening and her number just led to a recorded message saying she had left the service.
Since then I have been trying to contact an Occupational Therapist to arrange a further appointment for Joshua, and I have also become aware of dyspraxia and would like Joshua to be assessed for that, which requires a referral. For months I have not been able to get any response from the Occupational Therapy service that we come under, so have now asked Joshua’s school to put in the referral for me. They have done this, and in the process found out that Joshua has been discharged from the Occupational Therapy service.
Through my experience I am shocked that these services are set up to see children once, or twice and then never again. The structure of the system does not seem to support the need and because of this many of my son’s difficulties would /will not be addressed unless, it seems, I as his parent initiate it.
My reasons for being on the committee of the Cambridge branch of the NAS are twofold. On the one hand, I hope to be of help to other parents with children on the Autistic Spectrum - I know how it feels to live with ASD. I know how it feels to want to talk though difficulties with someone who has been through it. On the other hand, I am very aware of the deficiencies in the services offered to children on the Autistic Spectrum. I hope that by being on this committee I can help influence the improvement of services like Occupational Therapy. I am also involved in a Special Needs Support Group in my local village, and attend public meetings of groups like pinpoint (a parental involvement network for parents of disabled children). Tristan starts school in September which I hope will give me more time to get further involved.
