xmlns:og='http://ogp.me/ns#' Yeah. Good Times.: Black and white is for cookies only

Tuesday, March 20, 2012

Black and white is for cookies only

The blogosphere is a war zone, the players are autism parents vs. autistic adults, and you have to pick a side.

You can either believe that disabled people are burdens and tragedies or you can believe that disabled people are capable of living happy and fulfilling lives. You can acknowledge and accept the difficulties that autism parents live with every day or you can believe that struggling with autism means that you don't actually love your child. You can't mourn the tragic death of George Hodgins and feel sympathy for his mother at the same time; you just can't. This is a black and white battle and you need to choose which side you're on.

"You're not like my child. You can write. And have a job. And friends."

"You're abusing your child by giving him/her ABA."

"You're a fake autistic/a fraud/a poseur/the enemy of me and my child."

"Grieving because your child is autistic makes you selfish and is not okay."

I'm sorry, but that's fucking bullshit, and I refuse to participate in it. I will not pick a side, because none of this is black and white. There may be extremists on either side of any issue but as like most issues, the majority of us lie in the middle; in the grey area.

Here in the grey area, I know that my experience with autism isn't the same as your experience with autism, but that doesn't mean that my experience is less valid than yours, or that yours is less valid than mine. It just means they're different, and while I have not walked in your shoes, I can still be sympathetic to your feelings; and I expect the same from you in return.

That doesn't just apply to me, of course; that's for all of us. And of course this war didn't start recently, it's been waging for years; but until and unless we all... all of us.... come to terms with these facts, this war will never end. And what good is it doing for our kids? For the adults? For the adults that our kids will be some day?

My friend Rhiannon, who blogs at Unhandicapping the Disabled Life (and who is so much better with words than I am) says: "You can address those with disabilities as entities of value in and of themselves, and for themselves, or you can address them as if their value only exists as contextualized by the part they play in the lives and world of others around them. In either case, there is the issue of how you make those judgements. Do you judge a person, a life, and a place in the world only by its disadvantages, or only by its advantages? Do you judge things for what they are, or in contrast to what they might otherwise have been? Or, perhaps, can we be as realistic about the life of someone with disabilities as we can about any other life, and accept an honest dialogue that reflects the totality of the human experience. That is, after all, what everyone involved in this debate IS.... a human being. It doesn't matter if we're talking about a teacher, aid, therapist, doctor, parent, sibling, or anyone else in the support system (or lack thereof) that, directly or indirectly, is involved in the life of someone with Autism.... even that stranger in line at the store. The fact is, we're all human, and we're all in this together. Not for better OR worse, for better AND worse."

I added the emphasis on that last part because it perfectly sums up what I'm (lamely) trying to say. This "black and white war" does no good for anybody involved, and so I'm staying in the grey area. It's here that I get to both sympathize with my autism mom friends whose experiences have been so much harder than mine, and who tell me that it really is like a battlezone sometimes, and I can learn from my autistic friends who have made my life, and my son's life, so much better just for having known them. I'm lucky that I get both sides and if you're insisting on staying just on one, I feel sorry for you.

The world isn't black and white, and yours shouldn't be, either.



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Applause!!!!!!!!!!!!!!!!
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I think you said it very well yourself! Honestly, NOTHING is black and white (except, as you correctly identify, oreos)
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SING IT SISTA!!!!!
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also-those black and white cookies kinda suck anyway.

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2 replies · active 679 weeks ago
Surely you don't mean oreos?
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GODS no--i mean those stupid gourmet type dipped cookies that taste like cardbord dipped in baker's chocolate.

Oreos rock.
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Yes, yes, and yes again.
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Thank you for this! The fact that this is even a debate is preposterous. Everyone has a different life experience. I think it is possible to love autism and the unique gifts it has given my son, and also hate it for the things it has robbed him of, like a healthy diet, spoken language, and (so far) the ability to write or draw.

Also, I want to address the issue of grief. I grieved heavily during the time my son was being diagnosed. I was afraid for his future, and no one could give us any clue as to what to expect as he grew and developed. It was a dark, dark time, marked by lack of sleep, daily phone battles with Blue Cross, and confusing IEP meetings where we were treated very poorly. Selfish for grieving? Puh-lease. Grief is a perfectly normal response to such a life-altering situation.
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1 reply · active 679 weeks ago
I SO SO SO agree with that. Grief is valid. Even if you disagree with the reason for it, you can't tell somebody else that they're not allowed to do it, or say anything about the character of a person who is having feelings about something.
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Indeed. This is one of the reasons I had to largely un-involve myself. I'm not cut out for constant conflict and side-taking, and I found myself pretty consistently in the middle, anyway. It was a lonely and frustrating place to be, and then I realized that I didn't have to be involved that way at all if I didn't want to be, so I removed myself. Here's to the grey-dwellers.
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I don't get involved in the bickering. We all have our own path to travel; I'm old and tired and I don't need the pain of those pebbles in my shoe, making my journey more challenging.

As far as poor George Hodgins - I can almost see the logic in the mother's actions EXCEPT THAT SHE KILLED HER CHILD. The constant frustration with the inability to plan for my child's future, and the daily parenting challenges that are never-ending are enough to make me consider a bullet lunch, but there's no way I'd harm my son.

But don't worry, he's a kid only a mother could love most days, so I'm in it for the long haul. Nobody's lining up to volunteer, anyway.
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1 reply · active 679 weeks ago
I don't think there was any logic to her actions whatsoever. I can't even imagine a scenario that could ever happen in my life where murder suicide is seemingly my only option. But there's no logic to an action like that; you can't find a reason in it, no matter how much we want or need to have one; and as humans, we need to know why these things happen.
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"The test of a first-rate intelligence is the ability to hold two opposed ideas in the mind at the same time, and still retain the ability to function." (Fitzgerald)

You are one smart chick.
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1 reply · active 679 weeks ago
Who said I could still function?
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Yes!! You said it perfectly and much much better than I ever could have. It's something that's been on my mind for a long while and I'm so glad you posted it. :)
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Standing up on my chair and applauding. Bravo!
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I hate conflict anyway and watching parents and adults and children with disabilities fighting each other is upsetting and pointless. All I want to say is that every life deserves to be valued, and every child deserves to fulfil their potential, no matter what their start in life x
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I see the mother's frustration at finding the appropriate help, but nothing will ever justify what she did. I have a student in my class who falls between the cracks. He is too high functioning to qualify for state services, the family has no money and is on welfare, so they can't get help on their own. She is so desperate for help but she won't do a state run family therapy program because the one time that she tried it the therapist blamed her for her son's autism. (The old refrigerator mother theory.) I do what I can on my end, but her depression is a huge presence every time I see her. She fears for the future of her son and then she feels guilty because her son is high functioning so she thinks that she shouldn't complain. She sees a future where he is unable to hold a job and she is forced to care for him forever. I know, the word forced is a strong one, but it is an honest feeling for her. She is overwhelmed. He is 13 right now.

You are right. Nothing is ever black and white but these cuts to welfare and child services in my state are taking their tole on those who need it most. There is no help for the mom I know. Believe me, I have had many people try to find services and promise to get her some help, but it never works. Our system is seriously broken.
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Gaw, this grey zone is getting kinda crowded, in a good way. The picking sides is a thorn in my side. Very well said, very well said.
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I think that everyone should be treated equally. And it's a shame that people with autism, or other disabilities, aren't treated as such. If I had to describe the war scenario, I'd say it's people with disabilities versus all the "normal" people. And honestly, I'd choose the side with the non "normal" people anyway.
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Very well done. Gray areas are what life is all about. We aren't perfect, or the same. But we are all of value, and should be treated as such. Thanks for the discussion.
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I feel that there is a lot of judgment in parenting in general out there, where there should be support. Parenting is a hard job and though I don't have any experience parenting a child with autism, I know it is incredibly difficult, too. It is too bad that we can't realize that there is never any "right" answers and be there for each other.
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Brilliant, timely and very needed.
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So well said. Seriously. I hate that there are sides to any aspect of health, parenting, motherhood, emotions and more.

Life in general isn't b&w, nor do aspects OF life fall on either side of the line. So it's ridiculous to think that anyone can judge.

I'm sorry anyone forgets that.
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YES!!! All I have to say is YES.
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Oh definitely a good post. So torn between all of these things. Thank you again for posting.
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Excellent. You speak for all parents, you know
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Excellent post. So very true. I hear the same things from other people who have Fibromyalgia and/or Systemic Lupus... Our pain may be different, but your pain is no less valid than mine is. It's like comparing two different types of oranges. Yes, they are both oranges. One may be bigger than the other. Doesn't mean that it is better or worse.

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To tell me I'm wrong, or that I don't love my son because sometimes the entire ball of autism/services/meeting/meds/therapy is overwhelming and, yes, burdensome, is to deprive me of the very dignity that I possess in dealing with all of these challenges every day.

The broken system is a burden.

Families struggling without support, guidance, or respite is tragic.

But we villainize the parents? We have gotten so far away from the "village" mentality, and the willingness to help each other, that parents are left emotionally, spiritually and financially bankrupt. Can we not validate their struggle, their sacrifices, and offer words and deeds of support instead of criticism??

Like this post.

All the cool people are in the gray zone.
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Handflapper · 679 weeks ago

Even Oreos aren't just black and white anymore. Have you tried the Golden Oreos? Mmmmm . . .

It's sad that everyone cannot support each other. What profit comes from feeling sorry for ourselves and judging others? None at all. Great post, Jilly.
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I totally agree. I'm right there in the gray zone with you. I think as humans, we have to be! These issues are so very complicated. Some days I'm fine and others I'm practically prostrate with grief, but I adore my son and do not look at his autism as a tragedy or a curse. I just worry about his future and feel bad that everything is so hard.

I run three LEGO social clubs in my area and just had the teen group tonight. One kid B sat at my table and told me, "I HATE autism! It is so hard to have autism. Everything is so difficult and I am stuck with it my whole life!" It just broke my heart. So, is there something wrong with B because he is grieving the fact that he has autism?

I don't think I'm making much sense. Maybe I should just stick to saying I agree with you!
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Argh, emotionally judgmental people annoy me so much. As a person with Asperger's who has contemplated the possibility of having children on the spectrum, I have to say that I would personally grieve--as briefly as I could manage--for my autistic children. Because I've been there. I know it's tough as shit to go through. We of all people know that you have to go through life dragging autism around everywhere you go, and that it would be so much easier for us if we were NT in a world mostly full of NTs. So, yeah. It would upset me greatly that they would always be disadvantaged in a society that probably won't be fully understanding of the needs of autistic kids and adults for a very long time.

But, on the flip side, something else to think about is that the grief doesn't always heal into a healthy acceptance. Some parents mourn their children forever after, refusing to accept that their progeny won't ever be like them, or ever be "perfect," or will always be "wrong" somehow. They drag their kids off for miracle cures, try to force them to act "normal," because they're in total denial. Some adults with autism might feel tender and bruised by this sort of behavior and apply their experience to everyone else (as humans in general are wont to do). Or the oversensitive parties might be NT parents who can't assuage the guilt of feeling the grief, and overcompensate by lashing out at others who can manage their emotions in a healthy way. I feel bad for these people, because I always figure to be so nasty to others, there has to be some underlying pain that they're trying to squelch.
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