Parenting: Education and Aspergers (cubed)
Continuing our blog series on parenting, meet Jane Renton, a mum of three, from Nottingham. This week we're focusing on special educational needs.
Welcome to our house. It is in the middle of our street though is not middle of the road, and it's not neuro, or in any other way, typical.
Three of us have an Autistic Spectrum Disorder (ASD), and Lily (8) is severely visually impaired too, as is her sister Lula (6) who does not have an ASD but does have more profound mobility issues. Their brother Oscar has Aspergers and is very bright.
I too have recently been diagnosed with Aspergers, and their father Jeff has Social Anxiety Disorder - but that is an unsurprising result given the Vaudevillian scenes that we unwittingly create in public. It's normal for us and, with some disharmony, we function creatively.
In other households, the 'back to school' hush has descended and most parents are counting the manifold blessings of a free, largely adequate and sometimes exemplary, statutory education. Not so those with disabled and, in particular, ASD children.
Educational provision by Local Authorities can be temperamental, pompous, petulant and ambiguous; the traits of toddlers and teens are not dissimilar to the system that claims to shape them.
Inclusion Officers, Specialist Teachers and Teaching Assistants have to be courted and flattered, for fear of falling out of departmental favour in some areas.
Attending a Visually Impaired Children Taking Action (VICTA) weekend last month, the habitual coffee and defrag session showcased just how different the experience is, depending on the postcode you have.
Parents without Special Educational Needs statements talked in glowing terms of their local schools, whilst others spoke of Education Welfare Officers who were threatening imprisonment for children with school anxiety related absences. And there's the rub.
As Free Schools begin to open, the concept of choice is 'trending' round the country.
But try finding 'choice' when you have a high functioning ASD child, who has great academic potential, but cannot access noisy classrooms of 30. Or, try finding schools that have good facilities for children with visual impairments - not just a generalised Learning Support Unit that covers all needs and satisfies none. Nationally they are rare, locally they are often non-existent.
With three of us in the equation, Aspergers is mathematically cubed, and that stress domino effect is at times unbearable in our family. Add visual impairment into the mix and the compound starts to look explosive.
We all experience anxiety at a higher level by default and a simpler system would be invaluable.
Our lives are made no less enjoyable by our random gene selection; they are made less enjoyable by a system that invests in normality and trivialises diversity.
"Chaos is inherent in all compounded things. Strive on with diligence." Buddha.
My recommended online reading
Nicky Clarke's blog: http://nickyclark.blogspot.com/2011/08/ten-things-not-to-say-to-parent.html#comment-form (I have chosen a particularly good page of the blog - SO true!
Talk about autism: http://www.talkaboutautism.org.uk/
Thinking autism guide: http://thinkingautismguide.blogspot.com/