9/26/2011

What We Fight For

Have I said I've been in the trenches now for two decades, fighting to get what my children need? I get tired of the fight, tired of the battle with the outer world to get the resources needed, and so, when Bobby was nine, after he'd had a stroke, I realized I couldn't battle it all. I was worn out. I was tired of fighting for an appropriate education all while fighting the medical system to get him help, and honestly, all while fighting with him to give him the basic self-help skills that would let him be potty trained, be able to dress himself, bathe, brush his teeth, comb his hair, and eat meals without disasters. I was tired of being up for 36 hour stretches since he wouldn't sleep and was destructo-kid and couldn't be left unattended.

Tired, worn, and grieving were the first ten years of my son's life. You know what else they were? Enchanted with his beauty, in love with his smile, delighted when he hugged or cuddled or vocalized anything. As tired as I was, I was completely head over heels for my sweet boy. I made the most of every moment with him, spending long afternoons lying in bed with him, surrounded by his favorite books that we would read over and over, day after day.

By the time the girls came along, I'd had a couple years to process his stroke, the real risks of him having another one, and the break from fighting the school system. After his stroke, we brought him home. No more fighting that, no more. It became about teaching him in a safe friendly environment where his psyche was safe, and we resumed those wonderful afternoons surrounded by piles of books.

Eventually, after we moved here, next door to my parents, we worked at getting him into the day center where he would have the chance to work on socialization skills with others like him, where he would be safe, accepted, and loved. And if you've read this blog at all, you know what a shining, bright young man he is and how far he's come. He is sweet, opinionated, giving, loving, and he makes a difference daily. He is happy, he is loved, and he contributes. He is my light.

after helping me move into my office last month

His sisters shine, as he does. They are my garden girlies, and they never cease to delight and amaze. All three of them adore the others, sit on the couch for our evening sci-fi marathons entwined in each other, the three of them: a grown man who loves to play pokemon and yu-gi-oh with them and who loves them so much that all he can talk about is getting them this $50 video game that he knows they'll love for their birthdays, and these two long-limbed girls: they wrap themselves around each other in complicated pretzels and hug and squeeze and loll on each other in a way my brothers and I would never have done.

I fight for them. I don't speak for them. I don't speak for anyone but me. I teach them that their voices matter, that who they are is wonderful, perfect, and lovely and that they can be what they want to be if they are willing to work for it.


There is a difference between fighting for one's children and speaking for them. There is a difference between advocating for equal rights, equal access, and appropriate accommodations and speaking for others. They have nothing to do with each other. Perhaps people have forgotten that.

I do not speak for autistic people. I would not even were I an autistic individual.

I do not speak for parents of children with neurological differences. It is not my place.

I do not speak for anyone, to replace their voices with my own.

I speak for me and my experiences as a mother with her own issues and invisible disabilities who safeguards her children and fights for what they need, while working with them to teach them to fight for themselves for what they need. 

My experiences and my words in no way negate another person's story or perspective nor does it ride roughshod over their own experiences and words.

Maybe if people quit worrying about who's speaking for them and spoke for themselves and let others speak for themselves, there'd be less acrimony and accusations.

10 comments:

Christine Zorn said...

I love this. You said it so well.

farmwifetwo said...

I definately don't speak for them nor let them speak for us... Especially, at the IEP meeting coming up when I'm going to ask where the EA went and should I contact the Superintendant and the Trustees and tell them they should pull my kid's EA funding from that joke of a school down the road. Going to be a fun meeting.... NOT!!!

My goal is to raise 2 independant adults. My goal is to educate/mitigate the ASD symptoms so they can live full independant lives. I'm tired of the "neurotypical priveledge" crap that get's spewed and has for the last 6yrs I've been online. You aren't owed... nobody is. It is up to you to decide what you wish to do with your life... not up to someone else to do it for you.

I lobby for those things that are important for me and mine. What's important to you and yours is your job to lobby for. Which really ticks people off and I keep getting "what about those other children/adults"... Ummmm... I care... why??? I haven't the time nor the inclination to worry about them too. Cruel... well, yes (to use a R. phrase)... but it's not up to me to save the world.. people need to take responsibility for themselves.

Rachel said...

Brilliant, Kim. If people used the "I" pronoun more than the "you" or the "we" pronoun, I think that the situation would improve dramatically.

kathleen said...

Hell yes! My children are their own people..I do my best to help them try and navigate this world that we live in. That's my job as their mother.

This post touches on some of the reasons why I took a break? walked away from? the blogging community in general. Too many people scrambling to be right or number one-and definitely not enough listening.

autismandoughtisms said...

Love this post. And I really think it goes to the heart of a lot of (non) issues I've been reading about in the community lately. People would do well to read and think about your words.

chavisory said...

Applause, Kim. Amazing.

farmwifetwo...why should you care? Because how other people are treated affects how your kids will be treated. That would be true whether they were autistic or not. Stuff tends to come back around.

sharon said...

Yes.

TherExtras said...

I bet you can quickly tell the difference between a parent who is fighting for their child and one who is speaking for.

Happened to me again today. "I think he is more comfortable in this (bean bag on the floor) than in his (perfectly fit to develop sitting) wheelchair." I keep fighting for children to learn to sit.

Barbara

Dixie Sargent Redmond said...

Thank you for writing this. It is beautiful and thought-provoking.

KWombles said...

Thanks, all. I apologize for the delay in responding to comments.