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.
sortedmegablocks 24p · 679 weeks ago
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Mayor Gia · 679 weeks ago
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thissideoftypical 57p · 679 weeks ago
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jillsmo 103p · 679 weeks ago
thissideoftypical 57p · 679 weeks ago
Oreos rock.
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profmomesq 50p · 679 weeks ago
@dkotucker · 679 weeks ago
K. (G's Mom) · 679 weeks ago
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.
jillsmo 103p · 679 weeks ago
Emily · 679 weeks ago
Kim · 679 weeks ago
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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jillsmo 103p · 679 weeks ago
wantapeanutblog 70p · 679 weeks ago
You are one smart chick.
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jillsmo 103p · 679 weeks ago
jodi · 679 weeks ago
porchopolis 26p · 679 weeks ago
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Blue Sky · 679 weeks ago
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SandraSue · 679 weeks ago
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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Lizbeth · 679 weeks ago
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erica · 679 weeks ago
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Kelly · 679 weeks ago
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ace1028 48p · 679 weeks ago
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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Aubrey Anne · 679 weeks ago
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Michel · 679 weeks ago
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Kristi · 679 weeks ago
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whynotfathers 30p · 679 weeks ago
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Flannery · 679 weeks ago
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
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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Patty · 679 weeks ago
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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greengeekgirl 93p · 678 weeks ago
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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