I have four children.
They are bright & healthy.
Zuko homeschools them. Well, three of them. Little Maddie has just been born. At 14 days old, she is a bit small to be ‘schooled’, but life has been good to us. They learn easily. The ‘schooling’ is a fun part of our life as a family.
It has brought us joy.
It is amazing how we take stuff for granted – not even thinking twice about the fact that what we have is a ‘gift’ to be savored.
I was reminded of this, on Friday.
I received an e-mail from someone who isn’t as fortunate as I am.
She also has children.
Two of them.
The youngest one is like mine.
She learns easily & comfortably in a traditional environment.
The eldest one has Autism.
“Autism is a complex developmental disability that typically appears during the first three years of life and is the result of a neurological disorder that affects the normal functioning of the brain, impacting development in the areas of social interaction and communication skills. Both children and adults with autism typically show difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities.”
She is fifteen this year.
She had the opportunity to attend Quest School & has learned invaluable social skills through very intensive therapy & education. The teacher to student ratio at Quest School is one to six. There is a teacher’s assistant for every teacher as well. Some specialized & very skilled professionals.
This is the only way to provide a future to a child born with Autism or a related ‘Pervasive Developmental Disorder’.
‘My child can live a relatively normal life, due to what she received through Quest School’, she tells me.
So why the e-mail?
Quest School is the only semi-subsidized school for children with Autism in our region.
It receives a 50% subsidy from the Department of Education.
Well it is supposed to receive such a subsidy.
They have been informed that they won’t be receiving it just yet.
Perhaps towards August or September, six months into the financial year.
No one can say for sure.
In the mean time it is their problem how they will cope.
So they’re considering cutting peripherals.
The transport provided to children.
Which would mean there would be children who won;t be able to come to school, since you cannot give a child with Autism ten rand and expect her to find her own way with public transport to school and back home.
Disruption is the worst thing for children with Autism.
I suppose one parent could stop working. Travel with her child to school, by bus or taxi. That is possible. I just don’t know how they’ll be able to pay the monthly school fee, for although the school is supposedly subsidized, there is still a R1000 per month fee and without employment or rather, giving up employment, it would be difficult to cover that expense.
The other peripheral to cut is accommodation for out-of-town children.
So probably half of the children won’t be able to access the education & therapy available through Quest School.
The half who would, in all honesty, not have any other option.
There are private schools for children with autism.
In our region as well.
It seems one in every eighty children are born with this condition or something like it.
That’s a lot.
So I’m wondering what I can do about this?
How I can come alongside these families?
For in the end it isn’t about a school or a department of education or a government.
In the end it is about families.
Families who cannot cope on their own.
Families who need to experience community.
Now, more than ever.
It would be easy for me to say: ‘this is not my problem. I pay taxes. Government should take care of its responsibility. That’s part of why we pay taxes.’
And in some way I would be ‘right’.
That is why I’m trying to get a representative of the Education Department to come on-air at Kingfisher FM & explain why there is only a 50% subsidy & why the subsidy is not being paid & why the responsibility seems to be neglected.
Ask them what would happen to these children if the transport & accommodation is gone?
Ask them if they care?
If they consider it part of their mandate as an elected government to look after these vulnerables?
But still, families are affected.
And governmental or administrative change comes slowly.
And in the mean time, families, with children with Autism, will be left to their own devices.
Why am I blogging about this?
Maybe to express my frustration.
Maybe to see if it is only I & if I am making something of nothing?
I believe this world is a mirror of who we are.
They say, evil is the absence of empathy.
Maybe this is an opportunity?
For love to be personal again?
Maybe our world is one which does not care about children with autism & families who raise them?
Or eventually, maybe 50%
Maybe that is just the harsh reality with which my soul needs to come to terms?
What do you think?