I knew becoming a parent would mean I would be my child’s primary advocate, at least until he became an adult. As a parent of an autistic child, that advocacy role becomes even more important and longer lasting. But it’s not just because our children need so much more from us, and have sometimes extreme challenges when it comes to the simplest communication. More than that; autism parents have to become Battle Parents. We have to learn to fight, and keep up the fight, just so our children can access their basic rights and entitlements, and to allow them to be accepted as part of society.
We fight for our children to be able to take part in education. The simple act of being accepted into a local school, becomes a battle ground when schools learn that our children will need extra support. Once you’re in that door, you have to fight for your child to remain on the school roll; it’s easier to say “this child is too difficult, we think he belongs somewhere else” than “let’s find ways to make sure this child flourishes here.”
If you’re a parent like me – lucky enough to have the funding to send your child to a special needs school – you have to keep up the fight to have those schools remain open, as government policies and funding changes put them under threat.
We fight for the supports we’re told we are entitled to. Like a cruel taunt, you’re told you’re entitled to services that will make your life and your child’s life easier and better, but little comes of it unless you constantly make a fuss. You have to make phone calls, send emails, wait months for replies and action, then face constant reviews and reapplications just to hold on to what your child desperately needs.
Services end up allocated according to who has the most time and energy to fight for them, rather than according to need. And those most in need have the least time and energy to do the fighting. Arbitrary factors like who is assigned to your case or which part of the city you live in, can make enormous difference to what government services your family gets, if they get them at all.
Every part of life can be a battle when your child has autism, even the comments and disapproving looks you get out in public as you try to contain a tantrum of a child who lacks verbal skills, or try to get your son to calm down from an anxiety attack because he heard or saw a fan on the roof. Where there should be help and understanding from those around us, there is judgment and isolation.
So peace, to me, in my daily world, would be no more Battle Parents for autistic children. A world where our time and energy and passions are poured into parenting and caring for our children, instead of fighting bureaucracy and public condemnation. A world where I don’t have stories to tell about people and organisations that treat my son – and children like my son – as something unwanted and even something inhuman. A life where my communications with others are “thank you for your help and understanding” instead of pleading for that help and understanding, and being made to feel like a failure for even reaching out for that help.
So that’s the thought I’m adding to this Day of Peace. A thought that goes beyond just autism, and even beyond children with special needs; the hope that the services and rights promised to our families and our children can be met without having to be a Battle Parent. So we can spend less time fighting for basic entitlements, more time caring and parenting. And be one step closer to Peace.
Join in the Blog for Peace this Wednesday September 21st, by writing your own post too:
Peace could mean an end to war, achieving zen, ending an office feud, or secretly burning the neighbour’s drum kit. Or it could mean being the Officer of the Law who goes round to investigate a shameful case of musical arson. Whatever the topic, whatever the tone, it’s over to you.”
More details about Blog for Peace and United Nations International Day of Peace can be found via the links at the start of my post.