Thursday, March 21, 2013

Self indulgent post

*This is not to offend anyone within the community. This is only my truth, right now this second. Thanks.

I tell myself constantly that Autism isn't the worst thing to have happened to our family. Things could always be worse. One of us could die for Christs sake. Or have cancer. Or another possibly terminal illness.

But during a week like this, when the walls feel like they're closing in... when things are piling up... Autism, at times, can suck for a parent and, I'm guessing, for the Autistic. Being different isn't easy. Our family knows that. But for as much as this post is about Morgan, it's not. It's about me. His mom. His caregiver.

I love my son. I love everything about him, including Autism.

But there are times when I wish all of us didn't have to deal with the land mines that come along with childhood Autism. The distress on his face when sensory overload sets in. The meltdowns... Him shoving, headbutting me, and telling me, "you could be a better mommy!" Just like he did last weekend when I was trying to calm him down. It hurts. It breaks my heart to see my son, my world, so discombobulated and I can't do anything to help him except for what I'm already doing. Helping. Comforting. Loving. But it doesn't always feel like enough.

Then there are the land mines that others set out for us. Those are what I hate the absolute most. This week, Morgan's case manager wanted to set up an IEP meeting. It'll be for the rest of this school year and into the next. I knew we needed one, so no biggie, right? Wrong. It's an incredibly big deal when the school pops it on you that they are considering moving your son into the resource room. I don't even know how to process this except to research successful cases and model our case after those, if possible. To ask for a 1:1 aide. To demand he be evaluated for assistive technology. To be glad that they, too, think he needs more supports.

But I'm upset. Why hasn't anyone mentioned this to me before now? This is important. Why does there seem to be a breakdown in communication?

Then there is the insurance crap. We began the application process this week for the Medicaid waiver. We went to the evaluation yesterday and I brought with me the past five years worth of paperwork on Morgan, who attended the meeting with me (it was mandatory). During the ICAPS portion of the evaluation, I had to (painfully) go over my son's worse behaviors. Things he can't control, all within his range of hearing. I hated that. The boom was lowered, too, when we were told that the wait list is eight years long, Eight years... by the time that Morgan will reach eligibility for services, he'll be nearly aged out. Still, it's a grain of hope, right?

In my fantasy world, Morgan doesn't actually change. The meltdowns, stims, reading problems, social skills "deficits" never go away.  Instead, society changes around him. Insurance is there. Special education is acutally special and geared toward teaching our wonderful children. When my son does have a meltdown, strangers offer assistance instead of accusatory stares and ugly things to say. Kids offer to play games with him. Grown ups say, "What a sweetheart!" instead of staring when he tells them spontaneously "I like you."

In this imaginary place, I sleep enough and my house stays clean because I am never depressed or anxiety ridden over things which I cannot control. I stop crying. My kids see a happy mom, not this angry person who would willingly walk down a street naked if it meant that her son would get services if only it meant that her family wouldn't go without something they needed. Like dental care.

In this place, there is Autism acceptance. There is no calling Autism insurance "pet projects." There is no slashing of special education because some jackasses in Washington can't get off of their high horses and just friggin agree on a budget. People open their eyes to what is front of them instead of assuming that their "normal" is the only kind that matters.

I know that those things are imaginary. Because I've been watching and participating in this fight for nearly six years now. It's been two since Morgan was officially diagnosed. Six since we first saw Autism and began asking for answers.

I want to know... if it never gets easy, does it ever get easier to handle? For Morgan? For me? For any of us? For as hard as this is for the parents and families... what does this feel like for the Autistics?


  1. It doesn't get easier its just different. Y'all will become more confident in your abilities to ask for and receive what is needed. You will learn to negotiate all the bureaucratic red tape. There will be good teachers and some bad. People will come in and out of your lives some good some bad. Does the hurt of being ignored ever change no sorry it doesn't.

    1. You know, yesterday I was probably more confident in that IEP meeting than I've ever been. Of course, this is my 10th one or so, if I include the addendums and evals, so I should be used to it. I don't want an easy button, not really, I think I just want the moon. Not so much, right?

  2. love this, it sums up how I feel some days too! Hang in there though mama, we're all in this together :)

  3. I want to live next to you in your wonderland. We could have oodles of fun just being mum's and not "that crazy lady who wants too much for her kid!"

    1. Deal! There will trampolines, lots of Thomas the Tank Engine stuff (in a sound proof room because I'm so over hearing that peeper), sand and sand toys, and all those other sensory things for our kids. Oh, oh... and an unlimited supply of coffee, creamer, and wine. Lol.