Monday, September 28, 2009

Confessions of a worrier mother...

"Charity creates a multitude of sins"

Oscar Wilde

I was over at LB/RB last night reading Sullivan's post "Why I don't like "I am autism"" You can follow the link over there to read it. I thought that it was a well written piece. Some of the comments however, left me cold. One parent in particular grabbed the spotlight. Most every comment that they made, proved the point of Sullivan's post. This particular parent at times said some horrifying (in my opinion) things. This in turn lead to the entire thread being a debate between just about everyone and this parent. So much so that the title of the post could easily have been changed to "The life and times of Bensmyson"

I myself made a few comments. One in particular was in direct rebuttal to something this parent said. They made the comment that 1.5 million people in the U.S. SUFFER from autism-I replied with the simple statement-"my kids don't suffer" In turn I was told that I was one of the "lucky ones"-and then given a detailed description of all of their child struggles. I never implied that my children didn't struggle- simply stated that they didn't suffer. They were right however in one area-I am lucky. Although my reasoning and theirs probably differ. I don't know this for a fact, because they never responded when I asked "HOW I was lucky?"

Three of my kids are on different parts of the autism spectrum. They work very hard to try and navigate a world that doesn't always make sense to them. Every day poses new challenges.
Yet, they face them-because I ASK them to. How staggering is that? Being a mother is a powerful job-definitely not for the faint of heart. I take my position seriously. Oh, I have made many mistakes-which I no doubt will hear about in years to come. But I am learning. I think the most important lesson has been that children become what you tell them they are. All children, no matter what their ability. It is for that reason I talk about acceptance and love instead of laundry lists of symptoms or ridiculous and oft times dangerous treatments My kids have disabilities, they are not broken. They are not empty shells, they don't need to be "recovered".
They are right in front of me (most of the time asking for things) I had best make sure my words have substance and meaning. Because those are the words that they will carry with them for the rest of their lives. I am their mother. That is my job, my responsibility, and privilege.

It always astounds me when I am told things like "you are one of the lucky ones" or "your kids aren't really autistic". Astounds me. What I find equally mind blowing is the thought that because I accept my children, accept that three of them have autism-I don't do anything to help them. Nothing could be further from the truth. I just don't have the need to advertise the things that we have done, in such a way as to garner sympathy or admiration for myself. I'm a mother, and I'm just doing my job. It is not about me. It is about my children. Yes, we have worked really really hard, but my kids...they have worked harder. I might do the steering, but the driving is all them. They are incredible human beings-all four of them. I am blessed.

That's not to say I don't have days when I want to run away from home. That however, has nothing to do with autism ..but more to do with the fact that I have four very active kids, three hyper dogs, an overly affectionate cat, a leaky roof, faulty electrical wiring..and a myriad of other things.(sigh) I think that you truly know that you're a mother when a private and secluded bathroom of your own is your secret desire.

I am not a warrior mother. I am more of a worrier mother. I worry about getting my kids the appropriate services, I worry about their education, I worry about their needs being met, I worry about discrimination, I worry about them going out into the world as adults, I worry about films like "I am autism", I worry that they do not give voice to the people who do have autism...I worry that this will somehow demonize my children-who will always have autism, I don't however worry about "recovering", "curing", or somehow defeating them. I don't worry that my children view themselves as somehow broken and needing to be fixed. I don't worry that they see themselves as somehow less, or as a burden. They know that they are cherished, that they are loved, that they are different-that different can be hard, but it isn't wrong. I recognize that my children, all of them, are human beings. Deserving of the same respect, treatment, inclusion and acceptance as is any other human being. I recognize that it is my responsibility to try and make the world a better more accommodating place for them. I recognize the importance my role as their mother is. I think about all of this and can say with certainty, yes, I am one of the lucky ones.


Anonymous said...

Beautifully put, Kathleen.

Kim Wombles said...

Thank you for making my day with this. :-) Beautifully done. And so nice after the incredible ugliness on several of LBRB's blogs this past week.

Unknown said...

So true
See, I like that attitude. It keeps me coming back to blogs like this as it makes my heart feel all warm and cozy instead of down and miserable.

Also I was posting on leftbrainrightbrain too...

Clay said...

I think that "Bensmyson" learned something, at least I hope he did.
On his blog, he really didn't sound too bad. just badly uninformed.

I don't think he'll ever have the "knack" for mothering, as you just spelled out here. Too bad for Ben.

Casdok said...

Well said!

kathleen said...

@ Squillo-thanks
@kim-yeas,it seems that LB/RB had its share of nastiness this week
@Chromesthesia-thank you...glad you stopped by. I stopped going back to the thread-it just made me one should talk about children-or really anyone that way.
@Clay-I hope that Bensmyson did indeed learn something-although he seemed to swith back and forth between nice and downright nasty. This was my remedy.
@ Casdoc-thankyou..I always enjoy reading your blog.

Elaine Caul said...

Brilliant post! I always enjoy the way you look at things with such a sense of humor and optimism. It's a real shame that some people have to be nasty when commenting. Thanks to people like you the world will certainly become a more accepting place for your kids and anyone else who is "different" in any way. You are a real inspiration to other parents starting out on that road and no doubt your kids will also learn how to accept other people as they are.

Corina Becker said...

When I first heard the term "Warrior Mother", I thought it should also apply to neurodiversity mothers too, because you often fight just as hard as we do to get the accommodations and supports we need.
However, my interactions and Jenny's book has made me reconsider the term.

You're not a warrior mother; warrior mothers fight everything, it seems. They fight the systems (school, medical, etc), they fight their children, and they fight themselves.

No, you're not a warrior mother; you're a mother saint. (Heavens knows you need the patience of a saint to deal with some people)

kathleen said...

@3laine-I am a huge fan of your blog! It is so relevent to parents like me..@corina-the same goes for you as well..the way you dissect an argument logically and rationally-I'm envious.
Being a parent-a really is a privledge-I don't need any title..because the word "mother" trumps warrior or any other such name. They are my kids-everything is about them in totality. Yes, they struggle-and no mom or dad wants their kids to struggle...that is just human nature. But, Their struggles aren't about me-good lord, no. It is my job-any parents job to help them and guide them-no matter what-and to love and to cherish them. Too many parents forget that their children are human beings-not extensions of themselves. Too many people concentrate on just the struggle...oh the joy they are missing. My kids are not autism...they are kids who happen to be affected by it..wonderful kids. I really mean it when I say that I am blesed. :)

Nostrum said...

Yes! This is exactly it. Acceptance does not mean standing still, doing nothing. I lift him up to reach things and teach him how to use step-stools. I don't curse the fact that he's not taller.

kathleen said...

@ nostrum-if only more people saw it that way. Well put.

Anonymous said...

Ola, what's up amigos? :)
In first steps it's very good if someone supports you, so hope to meet friendly and helpful people here. Let me know if I can help you.
Thanks and good luck everyone! ;)