For some time now, I've dialed back my resistance of our school's administration. I've rooted for the inter-local and wished for its success. That inter-local isn't even here yet, and the disappointment seems inevitable. A wise woman once said to me in a training that your child's education doesn't have to be a Lexus, but the state has to give you a Ford at least. Well, Darrel is kicking the tires on a jalopy and wondering where it all went wrong.
There were big plans for ABA training. It never happened. Neither did TEAACH or anything else for that matter. We got a parent on the Autism Team for the township, and I was so excited. Oh, what we could do! Nothing. That's what we could do. Nothing happened.
We have so much technology, so many programs, and so much we could use to make our kids functional. It wasn't a matter of cost. I know that will be the excuse given, but it's just that, an excuse. Implementing policy in the classroom usually doesn't cost a dime. The price is will-power. Orientation training for teacher's assistants who do the lion's share of the work, that takes time, but it's worth it. Autism training which is mandated isn't even happening consistently. What does it all come down to? I have an answer, but it's not PC.
How the heck will we include the most severe students if we don't even give them comprehensive tools like sign language, PECS and behavioral training? The answer: we'll pretend we did. We put them out in a self-contained classroom or a general education setting and pray for divine intervention. One day, we'll be right back in that CCC discussing suspensions and change of placement. It's not good enough. Sorry, Indiana, but you are flunking out in special education.
Then to hear things from so many professionals and even advocates like "it's happening everywhere!" as if that excuses our failure to make it stop happening. Again and again, I've seen what true intervention can do for a child. I'm sick of being told it takes money! No, it really doesn't. It takes effort! If I can do it at home, you can do it at school for free.
Hitler didn't do it, Autism did!: The things we'll say online and how none of themwill find a cure.
The internet is a wonderful thing. Ten seconds of pushing buttons and the whole world is connected. Lately, I've looked up a few things, maybe out of morbid curiosity, on the argument to vaccinate or not to vaccinate. OMG! In internet speak, that means "What was I thinking?"
There are camps on both side of the river, and the battles rage fiercely on. There's Generation Rescue and Age of Autism, and there are skeptics found on sites like Scienceblog. There's Jenny McCarthy beating the drum, and there is the NIH and CDC waving the flag. In between, you have serious vitriol and hyperbole. Oh, Sweet Lord, the hyperbole!
On the above mentioned Science blog, I stopped to share our story. Don't ask me why. Temporarily out of my mind, I assume. Much later, I followed a link back and found the replies. For several posts, it appeared to have degenerated into actual conversation instead of the acidic shouting of words like "strawman", "Hitler" and "Babykillers". Having come to my senses, I've decided something. Nothing about any of this really matters, and I wanted to post my response here because some of what I said bears repeating often for both camps in this little forum war to nowhere.
I actually hadn't checked on this site in some time. There isn't enough time in the day to "lurk" on a forum. My mind reels. " Why are the trials, tribulations and questions from those of us who had our children injured by the actual diseases more trivial than those who claimed it came from the vaccine? What makes having the disease and suffering very real consequences not as dire as yours?"
Holy crap! When did I even suggest such a thing? That is an assumption drawn from your emotional state. This is what I mean. Having reviewed this entire thread, there is no value in any of this, and those of you having petty discussion on Dachau and Hitler and whether Jenny McCarthy is a slut or D-list actress, whichever side of the argument you rally to Vac or Non-vac, are wasting time and energy. This is a personal decision made within a family.
In free societies, it should stay that way. Removing mercury from vaccines was easy. It's done for the most part. What did it hurt? Removing Pthalates and other such chemicals? What could it hurt? Are they necessary in the product? Usually not. Does any of this matter? Not a bit. It may help and it may not. Like recycling, should we do it? Again, probably.
My family, like many others, still gets up in the morning struggling with our personal choices and circumstances. Nothing said here changes any of that. Remove morality and emotion from the equation for a second, all of you. Is there a problem and is it growing?
My suspicion is that we have a genetic propensity meeting modern day diet, chemicals, etc. Does that change my son's life? Not one bit. What changes his life? Hard work, education and repetition of tasks, research (lots of it), and keeping things as simple as possible. Our bottom line is that parents have the right to parent their children and decide their medical care. Period.
We can spread balanced information. That helps. We can educate parents on the issues facing their child now. That helps. We can work to fund research into every aspect of autism and developmental disorder. That helps. But the stuff above, that doesn't help. It only hurts the hurting and frustrates the already frustrated. I'm speaking to all of you. Age of Autism included. Put your energies into the things that help, and put comments and ugliness like all this in the garbage where it truly belongs.
My experience is that there is a middle ground between name calling and silence. It's called discourse. As a society, we should all take a look at the mark we leave on the world. When we want to solve the problem, it will get solved. In the meantime, let's stop alienating everyone around us. To Quote last night's episode of Stargate Universe, Divided, "Remember, we have to live with these people tomorrow". This is my one and only reply. Acting like children won't help our children.
The word retarded often requires description these days. It's always been a merely descriptive word, an adjective. It's a part of speech and nothing more. The trouble is that the minute it describes you or someone you love it has a power over your life you never knew a word could have. It's like the word Cancer, a noun. Your life suddenly has a divider in it; the time before that word and the time after when nothing is as it was.
When used to demean or describe another person unfairly, it burns far deeper than other words ever could. Why? Because it's not something you are or part of your identity, it's something that keeps you from being the authentic self you want to be. It usually refers to a disease or disorder that effectively separates one human being from the rest of the world around him.
"Retard" is particularly hard for me to hear as a mother, but it was hard before I had a child with autism. It's an ugly word in that context with an ugly meaning. It's effectively saying "you're so stupid, nothing can be done to help you and you'll never do anything 'normal'." What an ugly little lie!
Developmental retardation only means that life takes more effort. It's not demeaning to help my son or love my son. He's not helpless or stupid at all. He's a wonderful, adaptive person who never quits, never surrenders. Most famously, Ginger Rogers was once compared to Fred Astaire, that she did everything he did, but backwards and in heels. That's it exactly!
My son, Darrel, and I both walk down stairs, but the open slats don't bother me. I can see clearly and judge each step with ease, and I don't hold the railing in fear of falling. He does, but, each morning, we both march to the bus. Which of us is the most to be admired? Neurological disorders are obstacles, things that trip us up, but working with special needs, I've learned that the main thing that makes them special is the inability to just quit walking down the stairs or working the problem. They get discouraged, as do we all, but they just keep dancing.
The issue with the word is related to the power of the word. We fear that word as a society and as individuals, and it's not becoming any less scary in the 1-in-100 world we occupy. Even family members in the early days of our diagnosis could slip and use the word in front of us in just that context, calling someone else a "retard". Talk about awkward. It's our nature to belittle what we fear, so I would correct them gently and move on, case closed.
What I do not tolerate, what I cannot tolerate is the bandying about of powerful words with no understanding of the effect they have only to forward an agenda, an agenda of fear and hatred based on little fact or intellect, I might add! Mental retardation isn't a concept. It's a fact of life. The primary difference between yourself, Mr. Limbaugh, and my little boy is that he has a reason to throw a tantrum. His life is truly harder than anything you ever experienced in yours. If you had to change places with Darrel, you couldn't pull it off. He can do seventy-five percent of the things you do in a day, and he does it backwards, quite nearly literally. So think what you want about politics, but think again when you start calling anyone names that profane. You don't strike me as the type to apologize, but you really should to each and every person afflicted with the disorder you use as an insult. You can start with my son!
Furthermore:
If you agree with the following PSA, then"retard" is a bad, bad word.
Spinning is fun. We don't have to be auties to know that much. For Darrel, it 's a way of life. The things we do. . . We spin everything. If it goes in circles, we have to try, twice. If it makes colors when we spin it, OMG!
As his parents, teachers, friends, we laugh at the habit. We try to stop the habit. Sometimes, we accept the habit, but it is one of the things that makes us different. When we go out, we're sometimes carrying things to spin. We pick the hill we mean to die on, and spinning isn't usually that hill. Speech might be. Screaming might be, but spinning? No, not this week. Probably, not next week either.
Maybe that's what I wish people knew. We're trying. Hard. However, autism kicks our butts a lot. And it depends who you talk to whether it's somehow our fault. Some people think it's just part of who he is, and we're wrong to change him. Others say we're letting too much slide. Discipline is key.
Autism, for us, is severe enough that I have to pick and choose what we're going to fight for that week, that month. We focus on speech more often than not, and behaviors that alienate him from others like aggression or screaming. However, when we get the well-meaning advice or contemptuous glares from those in our community for whom we are an inconvenience, part of me wants to grab them and shake them. Scream a little myself. Say, "What the Hell would you start with, Lady?! Huh? Just what do you think you could do in my place? Because I could use a spa day. You wanna turn?" The difference between Darrel and myself is that I don't get to say that. God, I want to, but I don't.
Most days the misunderstanding just rolls right off, but some days it's harder. Some days, I woke up thinking about all the things he won't get to do or I'm tired and he's tired. I will admit to occasionally, during the early days when things were REALLY bad, letting my tongue go in a grocery store. Sleep deprivation lowers inhibition. I can't support that statistically, but it's my educated guess.
The good news is that he's better, and it's less of an ordeal (THANK YOU JONI) to go out and do things. The really good news is that he's become pretty aware of when I'm headed for my own meltdown, and Darrel hugs appear to be the cure.
Who knew there were autistics out there who love autism? It's really amazing. YouTube's The Wrong Planet is actually a study in what's wrong with autism and defines it as a disorder.
Kids with autism can't always get social cues and have difficulty empathizing. Since the broadcaster of The Wrong Planet is fine with his disorder, he doesn't understand why my son might not like his. The point is that Aspberger's/high-functioning autism is not the end of the spectrum that will destroy a child's life. On our end of the spectrum, computer broadcasting seems like a pipe dream.
My point is not to belittle the contribution of this child to the world at large. He has great talent and ability but little human understanding. That's another symptom, not a reason to rejoice. Egocentricity and autism go hand in hand.
Darrel has many strengths. Autism isn't one of them. Unlike some parents, I am not waiting for a cure, but you won't see me going to Autism the Musical anytime soon either. My son isn't NON-neuro-typical. His brain is physically hindered, and I wish to God it hadn't been because he deserved much, much more happiness in life.
Instead of marriage and children, he will grow old with me and his father. We will all work tirelessly to get rid of autism because the only thing that's changed over the last twenty years about our world is the environment. We are doing this to ourselves, and that is my heartfelt belief. There are changes to be made, and complacency isn't an option. Thank God for Autism Speaks and others like them.
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