Tuesday, November 5, 2013

Regression

     As most of you know, one of my son's happens to have Autism. I've never been that mom who sits in a corner and cries "why me?" every 20 seconds. I don't make excuses for his diagnosis or feel I have to explain anything to that crotchety old person giving me the 'back-in-my-day-we-were-better-parents-and-maybe-we-beat-children-who-acted-like-him" face. I'd like to think that I took his diagnosis, and everything that it entails, in stride. I am opinionated, pushy and a determined advocate. I hug him when he lets me and I kick his butt (verbally) when he needs it. I try to help other parents who are dealing with the same issues - and I am always here to lend an ear when they need it. There are moms I lean on for support, and for some of you - I might be that support. So, I want to share a not-so-fantastic insight ... and let you take away whatever lesson you need to:
     
     Squish has continuously kicked ass in SO many aspects of his "disability" that everyone (including myself) thought he was ready for main-stream education. We moved him from his SDC and popped him into general education at his brother's school.  We thought he'd be amazing since he's so "fantastic" academically and didn't even present the behaviors in his IEP anymore. Apparently, we were wrong. It's not the academics, because this kid is smart. Right on grade level, if not a little advanced. Nonetheless ... right now, we are in the middle of an Autism regression. Today, he slapped the living buhjeezus himself probably 100 times. He slammed his head into my back, the couch, his bed and his own knee almost all day. He hasn't had that high of a frequency of behaviors since he was probably two. I cried. I sat in my living room, holding him in a safety hold and silently cried. You know, the ugly face, no noise, just tears kind of cry? Yep. That one.

Not because I'm sorry that he has Autism.
Not because I'm the kind of tired a gallon of coffee can't fix.
Not because I'm scared for his future.
Not because my muscles are screaming at me for keeping him from blacking his own eye.
Not because I'm too poor to afford top-of-the-line therapies and products for him.
Not because I'm mourning the child that a therapist said he may never be.
Not because I'm giving up.

     I cried ... because in this moment in time, with me sitting there cross legged and restraining my super-strong little boy ... I know my son is hurting. He needs me to understand, to KNOW. He needs me to read his mind and know what to do, what to say, what to fix ... and right now?
I just don't know. I spend so much time focusing on the future, the past and all the acronyms. Sometimes I forget to live for NOW. Sometimes I forget to stop charting and graphing and planning ... and just rely on instinct. That deep in the gut feeling we all get? Instinct, and I used to trust it. I really need to get back to that. Ya know ... It's there for a reason.

Oh ...& sometimes, for a brief second, I forget that all the neuro-diversity in my house is 1000x more frustrating for the kids than for me ... and then I feel like a selfish asshole for the entire day.

Tell me: what are some things you wish someone would have told YOU before you started on the parenting journey? & let me know if you're a parent to any differently-able'd kiddos!

Sorry I have been sooo MIA lately. I'm trying to come back. Blogging is my refresher. My escape. My spa-day.

4 comments:

  1. I just went to my own son's IEP evaluation a few days ago. They have increased his services because they think (and so do I) that he really needs it. Mine has violent tendencies at times but they're far and few in between but when they do happen I'm scared not just for him but for the others in the house, especially his baby sister. There's nothing to do but just love them and give them all the love and support you can. You did an amazing job trying to calm him down, it might not seem big but just holding him is exactly what he needs.

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    1. I love that you can relate. The violent tendencies were a thing of the past, we thought. It is scary when you have little ones. Madison and my daughter are about the same age (I think) and it's tough, I hear ya. I am so glad that he got approved for more services, and that your IEP team is so on it. It's an amazing feeling when you have that faith that they are as invested as you are, huh? :) Give your kiddos a hug for me!

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  2. Oh this made me cry. I don't have a child with disabilities, but I can't imagine the daily battles you go through. You are so strong. He is so lucky to have a mom like you! Keep it up!

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    1. Thank you so much for your kind words. The battles aren't nearly as important as the victories, so that's what keeps me pushing. :) He teaches me SO much about life and patience.

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