Advocating For My Children with Autism

It's been awhile since I've written about being an autism mom and this weekend it's come up a few times in different conversations.  It's come up in a way where I get to decide to do something about it.  I haven't decided what that looks like yet but it's something that won't shut up, so it's time I listened. I was with a teacher from the Montebello school district yesterday.  We were talking budgets and it kinda surprised me to learn that they are allocated $.33 per student, per year.  So yeah, shout out to Montebello for short changing your kids by giving them the equivalent of a box of crayons for the year while teachers can't afford paper.  And mad thug life props to all the teachers that make it happen and teach our kids anyway.

I've learned that when you are committed, you do whatever it takes, no matter what it takes.  If you are not committed, you look for any excuse to turn and run.  At that point, it's okay to decide it's the best course of action and go with it. Even if that means accepting that someone else failed you in finding excuses.

We were talking about the education system that has structured learning times, and a minimum for physical education that gets pushed back as far as possible for learning. We talked about the schools having less art and music, and more structured learning and the kids that are falling between the cracks.  I've worked as a teacher's aide in a public school and a substitute teacher in a private school and I could go on a rant pointing out the good and the very bad in both, but that's not really the point.  I passed the CBEST exam without studying, and a credentialed teacher has taken the time to learn to teach what I pretty much have covered.  I like to think I'm sharp, but not sharp enough to hone someone else's child.  Not distanced enough anyway.

As a special needs mom, I learned that teachers can't help you serve your kids.  There are certain rules the districts have to follow. Teachers can get in trouble for educating parents in their rights. Whether or not your child is a student your local school, if they would normally be served by the school in your neighborhood, you get to ask for an assessment in writing, and they have to give you one for free within 30 days.  There are several rights and responsibilities that fall to parents and schools, and there's a booklet with that information that you can pick up from the school, and it reads like a boring textbook.  My advice? Get to know a special needs parent.  We've all been through the trenches, and we've all had to fight in one way or another and know a network of other parents that have learned in the same way.

Prepare to get your questions ignored.  Prepare to write letters and make phone calls that will end in an unanswered voicemail that you get to repeatedly follow up on.  Prepare to put your child through testing that will take longer than they have the patience for and teachers that don't get to be with your kids full time.  Take the steps they've outlined as their process, but don't be afraid to take it to the next level.

Prepare to be judged by a teacher that has taken classes and has been in a classroom for several hours with an aide or two engaged and  focused on teaching.  They won't know what it's like to work when they do, but still need to do laundry, make dinner and go to the grocery store with your kids, because you don't always get to structure adulting with blocks of parenting.

Accept that there will be strides and breakthroughs that had nothing to do with you.  It will happen with your children under the care of a teacher you might not like.  Know that at the end of the year, they'll love and miss your child because you've spent a year co-parenting without the struggle of reconciling scorned lovers.

Prepare for the anger and frustration.  Don't lose your shit because it won't serve you.  Know that you aren't alone.

It's safe to say the kids are set up to learn and test and test some more.  The grading scale looks for an average and that average includes children that can't communicate right along with kids that don't speak english, and kids that are gifted and sometimes ask questions their teacher can't answer. The tests are there to see where your kid needs help, not to categorize them into a workable distance.  Take it with a grain of salt and know you're doing what you feel is best for your child because parents aren't usually capable of doing less.

Listen to your kids, and figure out what they aren't saying. Get really comfortable with teachers and principals.  Recognize you're an adult and not a kid in trouble and act like a grown up. Make sure they know your voice when you call the school.  You aren't being annoying.  You're involved, and these principals and teachers will surprise you when they lower the mask of their profession, level a steady look of admiration and offer support in the ways they can.