What to share. . .

As my son gets older I struggle with how much to share on this medium. It's not about protecting folks from reading about the nitty gritty of Autism. It's about protecting my son's self image and autonomy. One day he's going to be reading a lot of stuff about his disability and I don't want him to ever feel shame or embarrassment as he reads my posts, should he care to do so.

It is normal to want to shield your child from being viewed in a less than perfect light. As his mother, it is a struggle between advocating for his needs, portraying an accurate view of his challenges so others can be helped or help, and protecting him. So for a bit now I haven't written. Mostly because I've had this unfinished post sitting there.

I am incredibly proud of him and how he continues to rise to his daily challenges and changing needs. He amazes me daily. Yes he constantly makes me want to pull his or my hair out while laughing at the absurdity that at times has become of my life. But the reality is that our household is a bit different. For example, he has night terrors pretty regularly. When he's throwing up at midnight, I'm battling with a screeching 50 lbs of terrified kid who's still stuck in a night terror. I must sound like the words meanest mom when I'm screaming at him to "wake the hell up" only to be heard over his screaming that's waking the dead. Or any other moment that seemingly should not sound like someone is being abused or killed but that for whatever reason in our house becomes a production. Seriously, I would not want to be my neighbor. Some days I don't want to be ME! And most days I want life to be easier.

I want others reading new or old to autismland, to know (1) you are not alone, (2) keep going, don't give up (3) ask for help when you need it because this life isn't easy. (4) i'm learning too.

I may not always post the raw truth of some of the challenges that we've overcome or live with. Sometimes its because it's too deeply emotional and personal and I just can't write it down. Other times I just want to be positive or ignore the rough spots. And most times, I just don't want to burn the sausage I'm cooking. Hubby if you're reading this, I may have burnt the sausage a bit because I was umm busy writing. Sorry. Just eat around the charred parts. I have lots of blog posts and things I want to write about, finding the time to write them is the challenge. Those twin threenagers keep me busy.

It's not always Autism.

My kindergartner is doing well in math, science, and music. He's struggling with writing (fine motor/vestibular issue) and reading. Unfortunately my kid is incredibly stubborn and once presented with a challenge or struggle most of the time he deems it worthless and simply refuses to do it. Overcoming that mindset is pull out your hair I need a drink worthy. We need to find some way to make him understand that he has to finish assignments even when its something he doesn't like or that he struggles with.

He's been acting out and struggling with completing his tasks in school. Classic avoidance behaviors. Age appropriate behaviors. I'm being told that this is AUTISM and something to be handled by his IEP or functional behavior plan. The special education teacher sent me an email to let me know what's been going on. I appreciate it. I of course replied with some suggestions. But I also walked away from the email until I thought about it. I wanted to say:
(1) have you discussed anger management techniques with the kid who name calls the classroom teacher?
(2) Have you discussed a behavior plan with the kid who clings to the door frame in an effort to stay with his mom every morning? (separation anxiety, extreme).
(3) Have you discussed positive behavior visuals and time outs with the kids who seem to thrive on being rude or punkish while standing in line every morning? 

Oh that's right, they don't have a diagnosis and so you can't blame it on Autism with them huh? So I guess all those behaviors are perfectly normal. It's just my kid, the only 1 with the diagnosis in his class which is the abnormal one right?

So of course let's consult his behaviorist, let's send me emails which I debate over an hour to reply to, let's implement a sticker chart and appropriate "reward incentive program" for him. But I'm still saying it's not Autism. This is just a stubborn 6 year old behavior.

For the record, I have no beef with how they're handling it. I appreciate being asked and included. I appreciate their willingness to truly make it an individual education plan. I'm just annoyed at the system and process in place. In other words, it's not you dear teacher, its me looking at the big picture. Don't take it personal. It's just an autism mom annoyed that her kid is getting singled out and its all a big production of let's follow the iep review process while the other kids who likewise don't want to do the work don't get singled out and its looked at just normal behavior. It annoys me. Its personal for me dear teacher. You have my heart for 6.5 hours each day and most of it is a challenge for him. And I feel he has to somehow prove he's well behaved all the time to earn his "sticker" while other kids can misbehave and that's okay. And society wonders why kids with ieps grow up with self esteem issues later on in life. . .