Sunday, December 14, 2008

Shame on me, I just want to have fun?

On another blog there were two people who made comments that I really had to respond to. Now this is not new to me, I mean I respond to a lot of other bloggers and the comments they may receive if I’m so inclined; or when and where I feel that I can offer something valuable or write in defense. So when I read the comments (opinions) of two people, well I kinda laughed and then I kinda said to myself: well WTF. Let me just say that I am not picking on anyone, I’m wonderfully open-minded and I love when people offer their own opinions—it’s what blogging is all about, isn’t it? And good for people who have something to say and want to share their personal view and opinions. So with that, I wanted to post my response to these two comments.

One comment was to the effect that if a parent can’t parent their kids under their own care (meaning at home and not residential), then shame on them. And another comment was something to the effect that we only choose residential to get our lives back and then go out and have fun, as if we don’t want to face our responsibilities of parenting our kids.


Before I write my response to these WTF comments, I am going to tell you about how I felt today:

I was feeling really low today, part of my sadness is that Meghan has gone back to RESIDENTIAL school for the week and I will miss her spirit and liveliness… my other sad feelings are actually conflicting because I am just terribly relieved that she has gone back and I feel guilty for that.

How’s that for shitty!?

Watching her bus pull out of the driveway with her as the only child passenger was not only sad to watch, it’s dreadfully painful when you realize that she is leaving to live somewhere else simply because I cannot mother her safely and effectively. Meghan’s autism is that real and that raw, and clear to me that people who have to choose this route don’t do it for kicks or because they just want to have a little fun in their life--they do it for survival and to be a good mother.

My response to these comments went something like this: Obviously you don’t have a child who qualifies for a residential program. For some of us it is our only hope for our children and their future. For me, my daughter has and does physically attack me, and on many occasions has bit me and had once stabbed me in the hand with a fork, and has made my other autistic child fearful to be in our home. W/o a “team” of trained and fearless teachers physically prompting her (sometimes pulling), my daughter would not do anything: She would not get up and get dressed, she would not shower, she would not go out into the community w/o having a meltdown or at least threaten one—try that type of mothering w/o help and support. And I do know, because I’ve done it for 13 years. Most of us have tried respite (PCAs) in our homes, but it doesn’t work because there are very few qualified people who are actually available and who actually want the job for very little pay (respite doesn’t pay very much). Residences offer several teachers on hand at all times so that our kids have a chance to learn how to properly manage their behaviors (safely and effectively) as well as offer job coaching and training … and the only hope for a future and a life that a burned-out and powerless mother just can’t possibly compete with.

Yes, to that comment from Anonymous, since your comment was directed at people just like me, I will respond for just me: Life is easier when she is not home with me. It’s actually easy and wonderful. I can actually have a life; I can go to a restaurant w/o worry and enjoy my other child, I can drive in my car and go to the store … a simple, mundane task that everyone in the world takes for granted, but I assure you not something I can easily and safely do with my daughter on my own—ever! And since Meghan’s behaviors are just that challenging (and, thus, qualified for residential placement), there are no babysitters, or day care providers, or even qualified respite providers who want the job of helping me.

This criterion is not unlike that of others who have to choose residential for their children. So, now you tell us, what are parents like me suppose to do? Is it our duty to be held hostage in our homes, ignore the needs of our other children and be physically and emotionally abused?

And yes, Anonymous, being able to go to the store whenever I want to buy a carton of milk w/o searching hours for a babysitter (for a 13 year old) is freaking Disneyland for me. What do you call Disneyland?


Tanya @ Teenautism said...

Well, here's what I have to contribute: Shame on those commenters! How dare they pass judgment on anyone when they have no idea what those lives might be like?

Em said...

You can't see me (or maybe you can, but that would be spooky!)...but I'm giving you a standing ovation! We are fortunate that our son lives with us. But we've certainly considered alternatives. And we know many families who have chosen residential. And not one family EVER chose it so they could just go out and have fun and duck out on being responsible. They chose it because that was the responsible choice.

Holly Nappi Collins said...

Thanks, Tanya and Em, for your comments and support and I agree with you both.

Mama Mara said...

You tell 'em, sistah! You inspire me.

Christina Shaver said...

When we adopted my son Evan, an African American boy being raised in our mixed-race Asian and Caucasian household, I knew I would be dealing with ignorance. I just didn't realize it WASN'T going to be racial ignorance -- but ignorance on the part of what people with special needs require.

I have had many a spat on the internet with people who make flippant comments about walking in shoes like mine. It is unfortunate. But it exists.

I'm glad to have found your blog and have a connection to other people going through the same issues.