Sunday, 14 October 2012

Aspergers and agoraphobia

Making the most of a good Day
When I started to home educate I had a picture in my mind of beach combing, walking in the Autumn woods and visiting museums.
For many that is how it is. Not that long ago we were able to have some fantastic weekends away visiting, London, Manchester, Halifax , Bristol  and  the wonderful countryside on our doorstep has enabled us to sail on Coniston water, climb Gummershow and jump over limestone pavements.
However over the last year, as puberty has hit my twelve year old son who has Asperger Syndrome  I have seen a decline in my son's willingness to go out. It came to a head on Friday when a suggested trip to our local shop resulted him holding a knife to his chest in fear at the thought! It is a terrible thing to see your twelve year old child so anxious about something as little as stepping out the door but to him it is enormous!
High anxiety and fear of the unknown is common in children with Aspergers and we are not alone ,but it is hugely stifling and needs to be addressed. I have learned that I am not the person to fight this battle. As the main educator and person in authority throughout the day my sons physical violence and anger is directed at me if he perceives any criticism. Living with him is like walking on eggshells and I have learned to pick my battles. In contrast my son will immediately do what his father asks of him.
This is not because I am unable to discipline - if I had bad parenting skills then my other two children would misbehave but they don't. This is down to the condition Oppositional defiant disorder. If I chose to discipline my son in the same way as his siblings in the normal day I would spend my life fighting with my son, Something which is draining and exhausting. I have learned to pick my battles and that means when it comes to having a bath, cleaning teeth or going out on non urgent trips I wait for my husband to be present I then know that my request will be carried out (eventually) and that violence will not be directed at either my other children or myself.
 I have struggled with  the fact that he can be disrespectful, swears at me and has the capability to be violent however I have learned that normal strategies are inappropriate. These behaviours result from severe anxiety and stress and my main role is to keep them under control so that Family life can function. Educating-Oppositional-Defiant-Children and The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Children have been confirmation to me that my strategies are the right ones. Despite criticism from parents who have 'perfect children' and can't understand how any child could be badly behaved unless the parents lacked the correct parenting skills I have stood my ground. I know my child. Sadly requests for help dealing with anger and violence from our local CAMHS have been to no avail. I have learned that not only is there a lack of ressources but a lack of specialist knowledge in Autism too.Some of the advice I have received would have been downright harmful had I followed it. One locum pschyiatrist criticised my decision to home educate and suggested I put my child straight back into school to learn socialisation skills. Perhaps she is unaware of the terrible bullying that some Autistic children receive at school or that children like my son spend half their lives being excluded because mainstream schools can't cope, or that suitable specialist schools are not available in this area! My son is above average intelligence and our local special school is for severely learning disabled children!
My experience of this system shows that this is not the place to go for help with my sons agraphobia, at least not for now although we have a campaign locally for better services after an eighteen year old with Aspergers comitted suicide lately, having been diagnosed too late (at 15) and having had inadequate and appropriate help.
Instead for now I will be seeking help from parents who have been through this, and adults with Aspergers to see how they handle it. They after all are the experts! I will also be reading as much information as I can to equip myself with strategies to help my son.Hopefully in time our children will get the support and expertise to which they are entitled from our NHS.

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