Been Busy: Advocating Against Abuse of Restraint and Seclusion

I haven't been writing much over the months, but I have been rather busy over here.

Bubba and I went to Washington DC this past week to attend a press conference on newly introduced legislation on the issue of seclusion and restraint. While it was my second trip to DC this year, it was Bubba's first that he can remember (we also visited as a family when he was almost 2).

My favorite part of the trip was when Bubba met Congressmen Miller:

Congressman Miller: Can I introduce myself to you?

Bubba, not looking up: Nooope!

Me: Secret forehead slap

I have been advocating on the issue of misuse of seclusion and restraint for years, as it personally affected our family. While my children are now safe (we homeschool), many MANY are not. Much of the public believes that child abuse is not tolerated in public schools, and that violators could be prosecuted. THIS IS NOT TRUE. Currently there is NO LEGAL recourse if your child is placed in a seclusion room or restrained. In many states, including Missouri, corporal punishment is allowed and Child Protective Services does not have authority to investigate. You'd think common sense would prevail, but unfortunately, children--especially those with disabilities--are being mistreated and abused everyday in our schools. I encourage you to look into the situation.

Tis NOT My Life!

Today I saw a video that told a story about autism. But it wasn’t my story, or my boys’ stories, or my family’s story. And it really pisses me off that people are going to watch this and possibly think (assume) that this is our story, our life.

I’ll let you watch it.



I couldn’t even get through the entire thing. I showed Hubby, who just stared at it gape-mouthed as we watched it in the kitchen so that the boys couldn’t hear. (Can you imagine them watching that? “Mommy, did I ruin your marriage?” “Mommy, do I make you cry every day?”)

Our life is not all roses, but it isn’t all gloom and doom either. One of the reasons we have not ‘failed’ is because we have made choices to balance us. Our life is meaningful. My boys’ lives are meaningful, and dare I say enjoyable! We certainly don't live the status quo, nor do we want to. We certainly aren't indistinguishable from other families, nor do we want to be. People's perceptions of our children negatively effect them and us much more than their disabilities do. And videos like this certainly don't make perceptions change for the better.

Our Autism Speaks walk is coming up soon. In the past I have had very conflicted feelings about this walk since I pretty much can’t stand the organization’s scare tactics. But I have walked to support my friends and their families more than anything else. I don’t know if can do it anymore. I can’t just write this off as “fundraising” anymore or ignore it while I support my friends. I can’t ask friends or family to donate to an organization that makes my children look like they have some deplorable, deathly communicable disease that is spreading through the air. Nor can I in good conscious make my children participate in the walk, enforcing a message that they had no part in creating.

I feel lost tonight, shaken, dejected, hollow, battered. I may cry. I may lose sleep. I may feel scared, overwhelmed, and helpless. But it’s not because of Autism. It’s because of Autism Speaks.

Facebook killed the mommy blog-star...

Ok, so I am not a blog star, but Facebook has basically killed my blog. Lately, with all of the homeschooling, gardening, cleaning, mommying, and just plain living, I am having little time (or attention span) to construct any worthwhile posts. But on Facebook, I can type my ADHD thoughts as "status updates" and post pictures from my new handy dandy iphone in the blink of an eye.

What once would've become a blog post has now become Facebook vomit. I signed up for Twitter and then decided that Tweeting may just push my bird-brain past the point of no return, being that I tend to forget what I'm typing before I get out a complete thought.

The boys work on "Look at me" pages, which was my bright idea to help with them journaling since they have such difficulty with writing. So they glue pictures, color things, and I script for them. Eventually maybe I will go through them and post some pictures and maybe even write something. Maybe. Look forward to the arch, the riverfront, museums, swimming, paddle boating, fishing, cooking, learning, creek walking, park playing, food growing, habitat building, hiking, etc.