Sunday, November 17, 2013

Confessions of a Worrier mother (four years later...) Wright is Wrong..

~"Charity creates a multitude of sins"~Oscar Wilde

 I have been blogging for almost five years. The whole reason that I started blogging was because I simply could not fathom how autism was being portrayed in the main stream media. I remember thinking"This isn't my experience-this isn't the way our life is..there has to be other families like mine!"  Thankfully, I have found many-both on and off line. This is a slightly revised post from 2009. It was my rebuttal to the horrible video "I am Autism" that Autism Speaks had put out. It scares me that four years have passed-and still, the idea that someone can speak so openly and horribly about human beings is considered (by many) acceptable. Four years later-and we need to do better.  There needs to be a lot more listening and a lot less judging in the neuro-diverse community. 

  It started with a blog post on acceptance. Which, as per usual-turned into an argument.  I myself made a few comments. One in particular was in direct rebuttal to something a 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 struggles. I never implied that my children didn't struggle- I simply stated that they didn't suffer. They were right however in one aspect-I am lucky. 

 Three of my four 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.  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 about the power of people like Suzanne wright and her awful words, 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.


farmwifetwo said...

There was nothing awful about her words except that parents like to put their heads in the sand and think it'll all go away and someone will rescue them one day. In the last 6mths I have been approached 3 times and each time got told "that's too much work".

She wrote the truth about the costs involved in health of the parent, loss of income by the family, the inability to go places and do things, the fact those children will always require care where their isn't funding or services to provide it, adult funding, health care etc etc etc.

I'm sorry the "realities" are offensive to the "autism is wonderful" crowd but they will be "reality" when children age out of the system.

My severe son is adorable. He is learning quickly and no longer ID. Well loved at school by his peers. They enjoy having him integrated for music and gym. They approach him in the mall deliberately to say "hi" and introduce themselves to me... these are 12yr olds... they don't do this unless they mean it. But the reality is - adult services, adult funding - is hard to come by. Being dumped in a group home isn't fair. He should have a family of his own.

So.... on the 12th we go for our first interview for a drug trial. Finger's crossed we get the med not the placebo and it clears out the fuzzies...

Autism... even in the best children... is not wonderful.

kathleen said...

I absolutely disagree. I wont say that it is not hard. It can be very hard. For everyone. However-if you have really read my words instead of just being defensive you would understand what I am saying. Suzanne Wright's words were demeaning. I don't know many people who speak of Autism as being all rainbows and unicorns. My kids do not poop glitter and fairy dust. They are my kids-human beings. They deserve to be spoken of with respect. Not including adult autistics in the conversation is wrong. BTW-I have never said that autism is wonderful. My children are. They are autistic. Therefore it behooves me to try and make the world a better and more accepting place for them. Perhaps if more people spoke of autistic people as if they were human beings( instead of burdens to be endured) deserving of acceptance, inclusion-a decent life..maybe things will change. I prefer trying to change things. instead of complaining and doing nothing.

CJN said...

Just want to say thanks to you and all autistics and parents out there who have come before me and my son and opened up with honesty. Thank you to those who stood up and said challenging is not the same as BAD. Everything leading up to diagnosis and beginning therapies is so confusing and emotional. That's where we just came from. To have others share realistic experiences and respect for their children is SO IMPORTANT. So much "awareness" about autism is an illusion, and coming into the world of autism is frightening for those who knew so little about it before. THANK YOU to everyone involved in the This Is Autism Flash Blog!

By the way, I've also had so many people tell me they don't think my son really has autism, which is really just really not a helpful thing to say. How do you respond? I'm not going to justify his diagnosis to anyone. And then in other situations when he's obviously having a harder time, people just make comments like he's terrible and "spoiled." Because people really aren't aware, as much as some would like to believe.

Full Spectrum Mama said...

"different can be hard, but it isn't wrong"


The problem with Wright's words were that she was SPEAKING FOR EVERYONE. @Farmwifetwo, with all due respect to your opinions and experiences, you DO NOT SPEAK FOR ME either!!! Autism IS wonderful for me. Not for you, fine. Please do not make the same mistake as Suzanne Wright.

To paraphrase @Kathleen, it shouldn't be wrong to be different WITHIN the neurodiverse community as well.

Thank you for your beautiful insights, @Kathleen.

Love, Full Spectrum Mama

kathleen said...

@CJN-Thank you for your words-they mean a lot to me.
I know where you are standing right now..I know that it can be scary and hard. I hope that you have good people around you. I co-run a directory That is filled with blogs by people on the spectrum, families of people on the spectrum, caregivers of people on the spectrum, doctors, name it. You would find a lot of friends there. :))
Yes-"Awareness" is an illusion! How much more aware can we possibly be? We need to just keep on trying to educate people-we are talking about human beings..oh how easily that seems to be forgotten..
Yes-I totally understand the "It's not autism-he is just misbehaving" kids are a bit older now..but back when they were got to a point where I would just say "He is doing the best that he can!" Let it roll off of you-(it's hard I know!) It does get easier over time..I promise.

kathleen said...

@Full spectrum Mama-Thanks :))

Anonymous said...

Just wanted to say how much I love reading your blog! I have a 27 year old son with Asperger's. He still lives at home with us, and maybe always will (I wonder how he'll cope when we're gone). He's a good guy. He also happens to be very intelligent and can talk at length (*sigh*) and depth about subjects that interest him. On Sunday it happened again....somebody told me that my son must only have 'mild'autism. I have had blood was shed.

kathleen said...

@ anonymous-Thanks so much..that really means a lot to me. Ha! Yes-I soooooo understand the talking "at length" I'm very glad that you were able to restrain yourself (over the "mild autism" comment) and did not send me this comment from prison! :)