Bristol Mum wouldn’t be what it is without the fantastic stories and experiences shared by its readers. Each story serves to inform, advise and sometimes even inspire other mums and dads who are also raising children in Bristol.
Today, Catherine Lombardo, a Bristol mum, kindly shares her experience of raising a child who has autism.
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“The important elements of my eldest son, Athrun, are his charm, sense of humour, intelligence and energy. He loves to cuddle, socialise, play and tell awful jokes! My husband, Dean, youngest son, Rory, and I adore him. The least important element of Athrun to us is the subject of this article – his disability. Athrun was diagnosed with autism in 2013.
I have yet to find another family in the same position as mine, although I know a number of families with autistic children. Athrun is the first child in my bloodline to be diagnosed with autism but his issues are common in my relatives. We have dealt with them successfully for generations, unwittingly supported by the previous, strict education system.
When I noticed Athrun’s preference for routine, noise sensitivity, tantrums and slight speech delay, I recognised them as family traits and took action – extra preparation before major changes; an area where he can avoid the distressing sounds and/or have his tantrums safely; and patience with his speech because I knew he would catch up like my brother did.
The reason for medical intervention was Athrun’s pre-school, which became very alarmed by his behaviour. I asked to see a paediatrician and she eventually decided he was autistic after a number of assessments. I found that nothing changed after Athrun’s diagnosis, whereas fellow parents tell me they feel overwhelmed by their autistic child(ren), fear for the future and are grateful for the help offered by the current education/health system.
It may therefore surprise you to read that I feel locked in a constant battle about Athrun’s autism. After all, I have just told you that I love him and am used to his sort of problems. My battle is with our local authority (South Gloucestershire Council) and his school, which should support him and meet his educational needs. Athrun is a pupil at a Resource Base for children with autism and/or social communication issues (it is a unit attached to a mainstream school, so Resource Base pupils can join the mainstream classes if appropriate). Athrun has a Statement, which provides funding for his additional needs – in theory!
My experience is that councils and schools have a bag of tricks, which they produce when they hear the words “autistic spectrum disorder”, and they flounder when those tricks do not work. While they want help at this point, they also resent it and feel undermined. South Gloucestershire Council also makes it hard for Athrun to access the funding and resources he needs.
As I write this, my local councillors and I are trying to make the council and school keep their promise to include Athrun fully in the mainstream school once term starts. It is the latest in a series of disagreements – I hope that it will be the last but this is unlikely with the council’s approach (Note: this issue has been resolved in the last few weeks).
Athrun does everything a normal child does away from school. We have just returned from a holiday in Wales. Athrun charmed me by describing the sea as like a brush because it was sweeping (the tide was coming in)! He had a great time in several play areas with lots of children and liked eating in restaurants every day because he could have ice cream for dessert!
We tend not to mention his diagnosis to strangers, though, because we find that a lot of people expect autistic children to be silent, look away and refuse to interact and the reality surprises them. If anyone remarks on his temper or dislike of coughs, I usually say that he suffers from a neurological condition (which autism is) and it causes tantrums or noise sensitivity, as applicable.
I wrote this in the hope that you would understand that Athrun is more than his label. My family and I take the view that he is a wonderful boy with many excellent qualities – one of them happens to be a medical condition called autism.”
By Catherine Lombardo.
Many thanks to Catherine for kindly sharing her story on Bristol Mum. If you are a Bristol Mum who has a story to share, please contact me (Hilary) by emailing firstname.lastname@example.org