Autism Awareness Because You Should Have a Peek

So I’m cheating with this post.  I actually shared it to my Facebook feed on this day in 2013, with some editing.

When the boys were babies, I talked to their pediatrician with the MDFAAP behind her name about the crying for 7 hours straight. I talked to her about the words they weren’t saying and the poop they’d smear and eat. I asked about a lack of eye contact. She assured me this was normal. Kid1 and Kid2 are 18 months apart and shared behaviors. Yes, we changed doctors. (Fewer letters behind the name, but much more personalized care.)

Autism was a new word for me. It took a long time to learn the name that covers the habit of running head first into the wall only to slam the back of their heads on the floor. I thought climbing on top of the highest pieces of furniture to jump down had more to do with being boys than a need to control a sensory overload. It took a while for them to break me by dumping all of their toys over their head the minute I picked them all up.

I once had a stranger come from off of the street into our apartment complex to investigate the child abuse sounding cries from Kid1 because I left him inside the house to unload groceries from the car.

I thought this was normal. When I found out it wasn’t, I looked for support groups. Of course, this was after a visit with a different doctor who looked me in the eyes and said, “you poor woman. There are medications for this.” She stood quietly as I sobbed and thanked her. In the long run, the drugs weren’t worth the risk to a 3 year old.

In the early days, with other parents of newly labeled kids, these groups became safe places to complain about the many ways our kids failed our ideals. It was a place of blame and anger. The group meant to strengthen and encourage me left me broken down and unable to face the strangers commenting on my children’s bad behavior and my lack of parenting skills and discipline. Once I told a woman that I was sorry my autistic kids were ruining her perfectly peaceful grocery store trip. I didn’t ask her what was wrong with her as she began to question the bad genes that put autism in our family.

I’ve heard all sorts of possible links, and commonalities, but so much is unknown. No one knows exactly where it comes from. There is no cure. There’s learning to cope and autism awareness. You see it in the form of meltdowns as long as you stop assuming all kids are bad.

At this point, having gotten past the harder stages and facing the social and emotional pain to come, my kids have given me a gift and education that have made me a better person. I hate that this is the road they have to walk because it is difficult and painful, but I feel gratitude for being chosen to help them find their way.

My autism awareness became my trial and error process in figuring out what makes my kids happy, and how far am I willing to go in mutual discomfort to help them adjust to neurotypical expectations.

While this can be a lonely place, it has a magic that I can only see when I try to look through the eyes of my sons.  They are intelligent and observant.  They don’t ignore the questions of life based on societal norms and what should be ignored in politeness.  They ask the bold questions and want to know why and how.  I like to think I get this from them.

With the space of learning who we are as individuals and as a family, I’ve been able to follow adults with autism on Facebook and they’ve been healing to me.  They’ve given me answers my children cannot yet articulate.  When I’m on Facebook.  I’m blogging and adventuring and posting, but rarely reading what others post anymore.  I think that’s what happens when you get to live the life you want.  You stop obsessing over other lives that aren’t yours.

There’s one girl I follow that has inspired so much hope in me. She has down days, but the fire inside of her makes hers the voice I would want on my side when I need an advocate. She has taught me that it’s not enough to teach my kids what is expected. I need them to set their own boundaries and know when and how to fight for those limits. She taught me that I am failing them by teaching them to be complacent and acquiesce to others because of an ideal that neurotypical is normal and right. That’s how you raise a victim.

The comfort from other families is knowing that I’m not the only one who wonders if my kids will ever live independently. I’m not the only one who worries about my kids having to care for each other if I die before my kids do. I’m not the only one that has to fight school districts and Regional Center as well as Social Security and In Home Supportive Services.  I will not be the only parent to have to go to court for guardianship of my children once they become adults. I’m not the only one who feels that Autism awareness groups are not on the same page with my boys. And I’m not afraid to share that being test subjects for an autism cure was no longer empowering, but frustrating and difficult as a family. I’m not the only one. We are not alone.

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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.

The Point of Labels on People is Pointless

The thing about having special needs or a different gender identity or sexuality is that you will always be who you are.  Labels that box you into a definition are for the people that aren’t able to see you as you are.  They need to define you.

We all do it.  We see someone we like and start looking for the things we share in common.  We meet someone we don’t like and start stacking differences to build a case.  If we removed these labels, and learned to look for commonalities instead of differences, we could meet everyone where they are, without needing to box them in and create distance.  They become people instead of labels.  This could apply to political parties, race, religion or diet.

I was hiking with a group through Griffith Park but it wasn’t all heavy discussion.

We talked about pregnancy changing my sense of smell so now I’m part canine.  We talked about sweating as a teenager, and how your body changes and reeks after you give birth.

We talked about cinnamon flavored toothpicks, and pink bathrooms and toilet paper.  Of course, this was met with, “they used to do that back then?” Yes, I tucked my old back in.

We talked about my singing out loud and a friend told me she loves my voice.  I assured her that changes depending on how loud the music I’m singing with is.

Mainly we talked.  We walked up a mountain.  We talked.  We laughed.  We took pictures. And I connected.  It was a good morning.